NEDA is committed to supporting research by connecting participants with research studies. The following research opportunities were submitted to NEDA with IRB approval.
Disclaimer: Please note that NEDA shares these studies as an information resource only. This listing does not imply endorsement or recommendation of the studies, the researchers, or the institutions listed. Please direct any questions about the studies to the researchers.
By Diagnosis
Anorexia Nervosa
Research Study: BrainEx Study
Contact Information
Contact Name: Kianna Zucker
Email:
Study Location: 675 18th Street, San Francisco, CA 94107
Website: https://gorrelllab.ucsf.edu/
Research Setting
Hospital with Separate Setting
Study Period
Start Date: 1/21/2021
End Date: 3/31/2026
IRB Approved
Diagnosis Researched
Anorexia Nervosa
Participant Requirements
Gender: All genders
Age: 14-18 years old
Travel: In person visits are located at: 675 18th Street, San Francisco, CA 94107
Compensation
$150 Amazon gift card
Study Information
Study Involves: Participants are randomly assigned to complete either 1 or 2 in-person study visits
In the 1st study visit, all participants complete:
– A short interview with our team
– Computer tasks
-Online surveys
In the 2nd study visit, ~40% of participants:
– Receive an fMRI scan (painless brain scan)
Description of Services: We are recruiting teens (ages 14-18) with anorexia nervosa OR with no history of an eating disorder or a current psychiatric disorder to participate in a neuroimaging study that is exploring how anorexia might be linked to changes in the brain that impact decision-making.
Participants will be randomly selected to attend either one or two in-person study visits. In the first study visit, all participants will complete a short interview, computer tasks, and surveys. Participants who are randomized to a second study visit will undergo a safe, noninvasive fMRI scan.
Participants receive a $150 Amazon gift card for participating. If you or someone else you know might be eligible, or if you have any questions, contact !
Research Study: CHARM Study: Characterizing homeostatic and neuro-computational reward mechanisms in anorexia nervosa
Contact Information
Contact Name: Margaret Westwater
Email:
Study Location: Yale University Magnetic Resonance Research Center (New Haven, CT)
Website: https://medicine.yale.edu/ycci/trial/gut-brain-signaling-in-anorexia-nervosa/?tab=volunteer
Research Setting
Hospital with Separate Setting
Study Period
Start Date: 11/13/2023
End Date: 6/10/2026
IRB Expiration Date: 6/10/2026
Diagnosis Researched
Anorexia Nervosa
Participant Requirements
Gender: Women
Age: 18-45 years old
Travel: Yes. This study involves two in-person visits to the Magnetic Resonance Research Center at Yale University in New Haven, CT. Travel expenses may be reimbursed.
Additional Information: To be eligible, you should meet the criteria below:
– Female
– 18-45 years old
– Have current symptoms or a diagnosis of anorexia nervosa
– No history of brain injury or neurological conditions
Compensation
You will be compensated up to $240 for your time. Travel expenses may be reimbursed.
Study Information
Study Involves: We are inviting women who are currently suffering with anorexia nervosa symptoms to participate in a brain imaging study on decision-making. You will complete two visits to the Yale University Magnetic Resonance Research Center (New Haven, CT).
At the screening visit, we will collect a blood sample and ask you some questions about your health history. The study visit will involve questionnaires, computer tasks, an MRI scan, and additional blood sampling. Then, we will ask you to complete follow-up surveys at home.
Description of Services: The study procedures are summarized above. Please email for additional details.
Research Study: Confirming the Effectiveness of Online Guided Self-Help Family-Based Treatment for Adolescent Anorexia Nervosa
Contact Information
Contact Name: Hazal Gurcan
Email:
Website: https://med.stanford.edu/edresearch/studies.html
Research Setting
Online Survey, Hospital with Separate Setting
Study Period
Start Date: 3/1/2023
End Date: 3/1/2028
IRB Expiration Date: 9/26/2024
Diagnosis Researched
Anorexia Nervosa
Participant Requirements
Gender: All genders
Age: 12-18 years old
Travel: None
Additional Information: Adolescent participant is between the ages of 12 and 18 years of age with DSM-5 AN; Adolescent participant lives with at least one family member; Parents of the adolescent participant are able to read and speak fluent English; Family has access to a computer with a reliable internet connection; Adolescent participant is medically stable for remote, outpatient treatment.
Compensation
None
Study Information
Study Involves: Stanford University is conducting a study on virtual treatments for anorexia nervosa in adolescents. The study will consist of: Randomization to either: Virtual family-based treatment (FBT-V), or Online guided self-help family-based treatment (GSH-FBT). In addition to treatment, participants will complete assessments and questionnaires throughout the course of the study.
Description of Services: With an incidence rate of about 1%, Anorexia Nervosa (AN) is a serious mental disorder associated with high mortality, morbidity, and cost. AN in youth is more responsive to early treatment but becomes highly resistant once it has taken an enduring course. The first-line treatment for adolescents with AN is Family Based Treatment (FBT). While FBT can be delivered using videoconferencing (FBT-V), therapists’ limited availability hampers scalability. Guided self- help (GSH) versions of efficacious treatments have been used to scale and increase access to care. The main aim of this proposed comparative effectiveness study is to confirm that clinical improvements in GSH-FBT are achieved with greater efficiency than FBT-V in generalizable clinical settings.
Research Study: Efficacy and Safety of COMP360 Psilocybin Therapy in Anorexia Nervosa: a Proof-of-concept Study
Contact Information
Contact Name: Greg Fonzo
Email:
Study Location: Texas
Website: https://www.clinicaltrials.gov/study/NCT05481736?term=Efficacy%20and%20Safety%20of%20COMP360%20Psilocybin%20Therapy%20in%20Anorexia%20Nervosa:%20a%20Proof-of-concept%20Study&rank=1
Study Period
Start Date: 10/12/2022
End Date: 6/1/2024
IRB Expiration Date: 11/20/2024
Diagnosis Researched
Anorexia Nervosa
Participant Requirements
Gender: All genders
Age: 18+
Travel: Yes. Out-of-state travel expenses will be covered by study sponsor. More details to follow.
Compensation
None.
Study Information
Study Involves: Study participants receive investigational psilocybin treatment and follow-up care at no-cost.
Description of Services: The purpose of this study is to investigate if COMP360 psilocybin therapy might help lessen the symptoms of AN. COMP360 is a synthetic form of psilocybin, a chemical compound found in some species of mushrooms. Research suggests that psilocybin may help in treating AN. COMP360 works on the serotonin system in the brain which is linked to the regulation of mood. Total participation in this study will be a minimum of 15 weeks and up to approximately 18 weeks. This includes the following:
A screening period (to confirm suitability for the study, meet with a trained therapist, and prepare for receiving the study drug) of a minimum of 3 weeks and up to 6 weeks.
A baseline visit (where subject will have a final preparation session with the therapist and to confirm that subject is still suitable for the study drug) the day prior COMP360 administration.
Dosing day (where subject will receive the study drug, COMP360) following completion of the screening period and baseline visit.
A safety follow-up period (to check overall health) during which time subject will attend the study clinic for regular visits over approximately 12 weeks.
The study is looking for individuals:
18 years of age or older
Meet criteria for Anorexia Nervosa: Restrictive or Binge-Purging type
Have at least one documented prior attempt at treatment in the past 3 years
Study participants receive investigational treatment (psilocybin-assisted psychotherapy) and follow-up care at no-cost. Travel and study related costs may be reimbursed.
Interested individuals can email , fill out a screening
Survey at this link: tiny.cc/UT2020 using referral code: COMP401, or call 512-495-5566 for more information and to begin the eligibility assessment process.
If you would like to reach the Center for Psychedelic Research and Therapy, we can be reached at , or you may contact Dr. Fonzo, Center Co-Director, at .
Research Study: Facing Eating Disorder Fears
Contact Information
Contact Name: Abigail McCarthy
Email:
Website: https://www.louisvilleeatlab.com/facing-eating-disorder-fears-study-online.html
Research Setting
Online Survey
Study Period
Start Date: 9/3/2021
End Date: 12/2/2024
IRB Expiration Date: 12/2/2024
Diagnosis Researched
Anorexia Nervosa, Atypical Anorexia
Participant Requirements
Gender: All genders
Age: 18-65 years old
Travel: None
Additional Information: Participants must have active, partial remission, or full remission AN or AAN and have been discharged from acute care (inpatient hospitalization, residential, partial hospitalization/day treatment, or intensive outpatient) within the last 6 months. Participants can still be receiving care and be eligible (ex. someone who stepped down from PHP and is currently in IOP, or someone who stepped down from IOP to outpatient, etc.).
Compensation
Participants will receive up to $110 for their participation in the study. They will be compensated based on study, mobile application, and self-report questionnaire completion. The specific breakdown is as follows: for completing the baseline, midpoint, and posttreatment questionnaires, mobile application questions, and follow-up questionnaires, they will receive $100. For completing the two-month follow up assessment, they will receive $10. No compensation is provided for completion of the screening.
Study Information
Study Involves: All participants can expect to spend 3 hours across two screening sessions and 3 hours for self-report questionnaire completion divided across four time points throughout 12-week study. Participants assigned to the FED-F treatment condition can expect to spend approximately 3 hours weekly on treatment tasks. Participants assigned to the Self-Monitoring condition can expect to spend approximately 1.5 hours weekly on treatment tasks.
Description of Services:
The main experimental phase of this study involves random assignment to an up to 12-session virtual relapse prevention treatment condition (Facing Eating Disorder Fears) or self-monitoring. For the Facing Eating Disorder Fears condition, treatment sessions will be separated by one week and will be delivered via a virtual treatment portal. Participants in the self-monitoring condition will complete three short surveys per day for up to 12 weeks.
Research Study: Mindfulness as a Recovery Tool for Anorexia Nervosa: A Qualitative Exploration
Contact Information
Contact Name: Keira Seacombe
Email:
Research Setting
Community Mental Health, Online Survey
Study Period
Start Date: 3/18/2024
End Date: 9/30/2024
This study has received approval from the Swansea University’s School of Psychology Ethics Board Committee Expiration date: 9/30/2024.
Diagnosis Researched
Anorexia Nervosa
Participant Requirements
Gender: All genders
Age: 18+
Travel: None.
Compensation
None
Study Information
Study Involves: Participants will be asked to attend a virtual interview via Zoom, or by telephone if preferred, which will take approximately 30-60 minutes.
Description of Services:
Mindfulness has been shown to be an effective approach across a range of psychological disorders, however the research is currently sparse in regard to certain eating disorders. We are conducting research to explore the lived experiences of individuals with anorexia nervosa who have engaged in mindfulness techniques such as meditation, yoga, mindfulness eating, body scans, or mindful breathing, as a recovery tool or coping mechanism for their eating disorder. To take part in this research, you must be over 18 years of age, and be identified as having anorexia nervosa. Participants will be asked to attend a virtual interview via Zoom, or by telephone if preferred, which will take approximately 30-60 minutes. Upon completion, participants will be further informed of the rationale behind the research.
This research is being conducted by Keira Seacombe (), supervised by Dr Rachael Hunter ()
If you are interested in being a participant, please contact Keira Seacombe via email: .
Research Study: Relationship Quality in Anorexia Nervosa
Contact Information
Contact Name: Indigo Erez
Email:
Website: https://researchsurveys.deakin.edu.au/jfe/form/SV_2gaZjSBhv9Wja3Y?fbclid=IwAR2Vb4yvH0b4J96wUvwzsRpbiJ9PH2dzI5_DBdIouZ6ywkYuDta7O-C5-8c
Research Setting
University/College Counseling Program, Online Survey
Study Period
Start Date: 1/1/2024
End Date: 12/31/2024
IRB Expiration Date: 12/31/2024
Diagnosis Researched
Anorexia Nervosa; People without a history of eating disorders and those who have recovered from anorexia nervosa
Participant Requirements
Gender: All genders
Age: 18-30 years old
Travel: None
Additional Information: Must be an adult caregiver participating either currently or recently in a young person’s eating disorder treatment.
Compensation
Prize draw of 10 $100 gift vouchers.
Study Information
Study Involves: Completing a few questionnaires online and a performance based task online.
Description of Services: The study is investigating relationship quality in anorexia nervosa. We are specifically trying to understand the role of empathy in these relationships and how deficits in this area might lessen the effectiveness of the treatments we use for anorexia nervosa. Participants need to be between the ages of 18-30 and are required to fill out some surveys online and then complete an online task where they identify emotions from facial expressions. The survey only takes up to an hour (most people finish it in a shorter time frame). We are looking for people with a diagnosis of anorexia nervosa, people who have previously lived with anorexia nervosa but have recovered, and people who have never experienced anorexia nervosa.
This research could inform how we subsequently treat anorexia nervosa. For example, if we find that people with this condition have difficulties with empathy and relating to others (which there is already preliminary evidence for in the literature), we could adapt the way we treat anorexia so that we are not relying on the therapeutic relationship between the client and the clinician. Instead, we might add empathy and relational skills to treatment to help the therapeutic relationship and boost overall effectiveness. Alternatively, it might be a cue that we need to look at alternative therapies that don’t rely on the therapeutic relationship. Additionally, this would help us understand more about the social support of people living with this condition.
The study has ethics approval to be shared via relevant health clinics and we have resources for participants who may become distressed by the content (but we believe this is unlikely based on the questions we are asking participants). We also have a psychologist on our research team and his details are provided to participants should they require additional support or guidance in utilizing the provided resources.
Research Study: Smart Technology for Anorexia Nervosa Recovery
Contact Information
Contact Name: Anjali Sharma
Email:
Website: https://care.ku.edu/research
Research Setting
Online Survey
Study Period
Start Date: 5/1/2023
End Date: 6/30/2025
IRB Expiration Date: 9/27/2024
Diagnosis Researched
Anorexia Nervosa, OSFED; Individuals with past history of weight restoration in treatment.
Participant Requirements
Gender: All genders
Age: 13-21 years old
Travel: None
Additional Information: Participants must have attended intensive care in order to restore weight in the past 18 months (i.e. inpatient, residential, partial hospitalization, or intensive outpatient). Participants must now be in regular outpatient care, or seeking outpatient care.
Compensation
Participants will be compensated for each procedure completed as part of the research study. The maximum compensation is $183.50.
Study Information
Description of Services: Do you struggle with feeling anxious or depressed, can’t cope with life stressors, or want to start improving your body image once and for all? We can help! We’re researchers at the University of Kansas and we’re contacting you to let you know about an additional, free, and low-commitment support app. Our app was made in collaboration with teens and young adults (and their caregivers) who have lived experience with an eating disorder. Because we made this app with you and for you, it addresses the problems “underneath” the eating disorder. Things like feeling sad, having bad self-esteem, and trouble coping with stress.
For 12 weeks, you’ll get interactive app content that builds on the skills you’re learning in therapy to help you feel less anxious and depressed, manage life stressors, and improve your body image. The info from your app will be shared with your therapist, which will help them help you better during sessions. You can click this link and see if you’re eligible: https://redcap.link/3s8panxx
Want to participate but don’t have a therapist? Just send us an email. We have a listing of therapists who want to help you, including many low-cost options!
Study Involves: Study procedures include questionnaires, interviews, and downloading and using our mobile phone app to complete weekly surveys. Depending on what group you are randomly assigned to, you will either review 2-3 treatment lessons each week or complete a few daily diary reports each week. Your outpatient therapist will review your survey responses and app content during the study. Use of the mobile app will last 12 weeks, with follow up surveys at 3- and 6- months after the app ends. The risk of participating in this study is no greater than present in routine psychological testing.
Research Study: UCSF FBT Study
Contact Information
Contact Name: Kianna Zucker
Email:
Study Location: 675 18th Street, San Francisco, CA 94107
Website: https://reillylab.ucsf.edu/
Research Setting
Hospital with Separate Setting
Study Period
Start Date: 8/21/2023
End Date: 8/31/2027
IRB Approved
Diagnosis Researched
Anorexia Nervosa
Participant Requirements
Gender: Women
Age: 14-17 years old
Travel: In person visits are located at: 675 18th Street, San Francisco, CA 94107
Compensation
Up to $235 in Amazon gift cards
Study Information
Study Involves: Participants with anorexia nervosa will receive 6 months of family-based treatment at no cost through our clinic at UCSF.
The research component of our study includes:
– A screening call
– A Zoom appointment
– 1-3 meetings in person. Participants with anorexia nervosa will attend an in-person appointment in the first week of treatment, 1 month later, and after 6 months of treatment. During each meeting, teens will be asked to complete self-report questionnaires and some brief computer tasks.
Description of Services: We are recruiting adolescent females aged 14-17 who either struggle with anorexia nervosa and are already receiving care through the UCSF Eating Disorders program, or adolescent females aged 14-17 who have never struggled with an eating disorder or a psychiatric disorder.
Participation in the study will involve completing a brief screening process, attending a Zoom appointment, and 1-3 meetings in person. During each meeting, teens will be asked to complete self-report questionnaires and some brief tasks.
Participants can earn between $95 – $235 for participation in the study.
Participants struggling with anorexia nervosa will receive up to 6 months of psychotherapy at no cost with members of our team.
Research Study: Understanding Decision-Making Across Psychiatric Disorders
Contact Information
Contact Name: Adanya Johnson
Email:
Study Location: 203 E. Cary St., Richmond, VA 23219
Website: https://redcap.vcu.edu/surveys/?s=JCDPN7XJL8YLTLHH
Research Setting
University/College Counseling Program
Study Period
Start Date: 9/1/2023
End Date: 9/1/2028
IRB Expiration Date: 12/31/2024
Diagnosis Researched
Anorexia Nervosa; OCD
Participant Requirements
Gender: All genders
Age: 18+
Travel: Participants are required to travel to the CARI Center at Virginia Commonwealth University (located at 203 E. Cary St., Richmond, VA 23219) for an MRI scanning visit. Travel reimbursement may be available. To learn more, contact the study team at .
Additional Information: Please complete the screening survey linked in the Website section.
Compensation
Participants can receive up to $500 for completing this study (plus potential bonuses for task and survey performance).
Study Information
Study Involves: The REPEAT Lab at Virginia Commonwealth University is currently recruiting adult participants who have symptoms of anorexia nervosa (e.g., restrictive eating, weight loss, fear of weight gain) and healthy adult participants with no history of a psychiatric disorder for a research study. The goal of the study is to understand how decision-making and its underlying brain function differs between individuals with symptoms of anorexia nervosa, those with symptoms of obsessive-compulsive disorder, and people with no history of either disorder. Participants in this study complete 3 study visits over the course of the year. The visits will involve questionnaires and interviews about participants’ mental health and health behaviors (e.g., eating habits), a brief medical screening with height, blind weight, vitals, and blood draw, and computer tasks completed during an fMRI brain scan. Additionally, on 2 occasions between visits, participants will complete online surveys on their smartphone for 2 weeks. Participants can receive up to $500 for completing this study (plus potential bonuses for task and survey performance). Some aspects of the study can be conducted remotely and reimbursement may be available for some travel costs.
For more information, please contact the REPEAT Lab at 804-828-2658 or , or click here.
Description of Services:
The goal of the study is to understand decision-making and its underlying brain function differs between individuals with symptoms of anorexia nervosa, those with symptoms of obsessive-compulsive disorder, and people with no history of either disorder.
Research Study: VIBRANT Study (Virtual Interventions to Bolster Recovery following Anorexia Nervosa Treatment)
Contact Information
Contact Name: Kira Venables
Email:
Website: https://redcap.vcu.edu/surveys/?s=JCDPN7XJL8YLTLHH
Research Setting
Online Survey, University/College Counseling Program
Study Period
Start Date: 10/24/2023
End Date: 8/1/2025
IRB Expiration Date: 2/7/2025
Diagnosis Researched
Anorexia Nervosa, Atypical Anorexia.
Participant Requirements
Gender: All genders
Age: 18+
Travel: None
Additional Information: Discharged from intensive treatment (inpatient, residential, PHP, IOP) within the past 6 months
Compensation
$500 total (plus up to $50 in potential bonuses)
Study Information
Study Involves: -Baseline eligibility/assessment visit
-Computer tasks
-24 weekly individual treatment sessions on Zoom
-One week of phone surveys (EMA) before and after completing the study treatment
-Mid-treatment, end-of-treatment, and follow-up assessment visits
Description of Services:
The REPEAT Lab at Virginia Commonwealth University is seeking adults who have recently been discharged from higher-level care (e.g., residential, inpatient, partial hospitalization, or intensive outpatient programs) for symptoms of anorexia nervosa (e.g., restrictive eating, weight loss, fear of weight gain) to participate in a research study examining a potential new treatment.
The purpose of the study is to compare two different remotely-delivered behavioral interventions on how well they support eating disorder recovery following intensive treatment. All study procedures are conducted virtually. In the first visit, which takes about 4-5 hours to complete remotely, participants complete interviews and questionnaires about eating habits and psychological experiences, have height and blind weight measured, and complete computer tasks. Participants are also asked to complete questionnaires on their mobile phones over one week. After completing assessments, eligible participants will be randomized to receive one of two behavioral interventions designed to bolster recovery following intensive treatment. Each intervention consists of 24 individual, weekly, hour-long sessions conducted online with a mental health practitioner. Participants will remotely complete assessments and have blind weight measured weekly throughout and after intervention sessions to monitor satisfaction and progress. Because this study includes new, experimental interventions, it is possible that not all participants will directly benefit from study participation. Participants can be enrolled in other treatments while in this study. Participants will be compensated up to $500 (plus possible bonuses) for their time.
ARFID (Avoidant Restrictive Intake Disorder)
Research Study: ARFID – Genes and Environment (ARFID-GEN)
Contact Information
Contact Name: Jennifer White
Email:
Website: http://arfidgen.org
Research Setting
Online Survey, College/University
Study Period
Start Date: 1/5/2023
End Date: 8/31/2024
IRB Expiration Date: 8/8/2024
Diagnosis Researched
ARFID
Participant Requirements
Gender: All genders
Travel: None
Additional Information: All participants must have a mailing address in the United States. For participants under 18, parent/guardian consent is required.
Compensation
For those who complete the required questionnaires and submit a saliva sample, a $25 amazon gift card is provided.
Study Information
Study Involves: The study involves taking an online eligibility survey to see if you are a good fit for the study. If so, you will be asked to answer additional online questionnaires and provide a saliva sample using an at-home test we mail to you.
Description of Services: The ARFID- Genes and Environment (ARFID-GEN) research study is looking at environmental and genetic factors associated with avoidant/restrictive food intake disorder. Anyone with ARFID, picky eating, food aversion, disinterest in food, or has a fear of choking/vomiting is invited to participate. A medical diagnosis is not required.
Binge Eating Disorder
Bulimia Nervosa
OSFED (Otherwise Specified Feeding or Eating Disorder)
Multiple Diagnoses
Research Study: Assessing the Influence of Caregiver Factors on Family-Based Treatment (FBT) for Child and Adolescent Eating Disorders
Contact Information
Contact Name: Sara A McCord
Email:
Website: https://unesurveys.au1.qualtrics.com/jfe/form/SV_bOr9S3xyO6ydvP8
Research Setting
Online Survey
Study Period
Start Date: 12/19/2023
End Date: 12/19/2024
This study has received approval from the HREC (Human Research Ethics Committee). Expiration Date: 12/19/2024
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa, OSFED; Caregivers of children or adolescents aged 6-18 receiving eating disorder treatment
Participant Requirements
Gender: All genders
Age: 18+
Travel: None
Additional Information: Must be an adult caregiver participating either currently or recently in a young person’s eating disorder treatment.
Compensation
None.
Study Information
Study Involves: Participants will complete an online survey once, which will take 10-20 minutes.
Description of Services: This study tests a new assessment measure to identify caregiver strengths and challenges, so that appropriate support may be offered to assist parents and care givers participating in eating disorder treatment for a child or adolescent.
Research Study: Caring for a Young Person with an Eating Disorder
Contact Information
Contact Name: Paige Davis
Email:
Website: https://tinyurl.com/CarerStudy
Research Setting
Online Survey
Study Period
Start Date: 3/5/2024
End Date: 9/1/2026
This study has received approval from the Swinburne University Human Research Ethics Committee (approval no: 20237264-16530). Expiration date: 9/1/2026.
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa, OSFED; Caregivers of young people (aged 25 or younger) with a current or past eating disorder diagnosis
Participant Requirements
Gender: All genders
Age: 18+
Travel: None.
Additional Information: You are eligible to take part in this research project if you:
– Are aged 18+ years old
– Are able to read English
– Identify as the caregiver of a young person (25yrs or younger) with a current or past eating disorder diagnosis
Compensation
None
Study Information
Study Involves: The study involves an online survey that should take no longer than 45 minutes to complete. This can be completed at a place, date, and time suitable to you. You will be asked to respond to basic questions regarding your demographics (e.g., age, gender, relationship to the affected individual), and to provide basic clinical information regarding your young person (e.g., age, gender, clinical diagnosis).
The online survey will also involve a series of measures and questions exploring your experience as a caregiver, the impact of caregiving, and your needs as a caregiver. Upon conclusion of the survey, there will be the opportunity for you to enter your email address to be contacted regarding a follow-up interview and/or trialing the intervention should you be interested.
To participate, please visit:
https://tinyurl.com/CarerStudy
Description of Services:
Researchers at Swinburne University, in partnership with Eating Disorders Families Australia, are seeking volunteers to participate in a research project exploring the experience and impact of caring for a young person with an eating disorder, in addition to caregivers’ needs and experiences.
It is hoped that findings from this study will be used to inform the development of an intervention for caregivers.
Research Study: Cognitive Behavioral Therapy (with Self-Compassion) versus Mindfulness for Adolescents with Bulimia Nervosa and Higher Weight
Contact Information
Contact Name: Janet Lydecker
Email:
Website: https://linktr.ee/yaleteenpower
Research Setting
Hospital with Separate Setting
Study Period
Start Date: 1/1/2023
End Date: 12/31/2025
IRB Expiration Date: 12/31/2025
Diagnosis Researched
Binge Eating Disorder, Bulimia Nervosa, OSFED
Additional Notes: Teens with higher weight and binge eating and extreme weight control behaviors (purging) – can be subthreshold BN
Participant Requirements
Gender: All genders
Age: 13-19 years old
Travel: None
Additional Information: Parent of child <18 must provide consent and participate in monthly family sessions.
Compensation
$225
Study Information
Study Involves: Interview at beginning and end; monthly surveys; weekly online (zoom) telehealth 1-hour therapy sessions with clinician.
Description of Services: We are recruiting adolescents who binge and purge (or go to extremes to lose weight) and have a higher weight.
About the treatment:
The study treats bulimia nervosa using cognitive behavioral therapy or mindfulness
The treatment is delivered by telehealth (zoom)
There is no cost to the patient, and no cost to their insurance
Treatment lasts 4 months
Who to refer:
Adolescents (all genders) between 12-19 years old
For this study, binge eating is feeling out of control while eating; purging can be many different behaviors including self-induced vomiting, overexercise, fasting, misusing laxatives/diuretics, etc.
To see if eligible:
The teen or parent can call: (203) 785-7210 or email:
The teen or parent can review general information: http://m.yale.edu/teenpower
Direct-to-provider: email Dr Lydecker at
Research Study: Does inflexible thinking determine adherence to mental health therapies?
Contact Information
Contact Name: Shaunak Deshpande
Email:
Website: https://research.sc/participant/login/dynamic/CF8B96BD-ACC4-4780-99BE-1E20CA8D7C3E
Research Setting
Clinical Psychology Program, Online Survey
Study Period
Start Date: 2/5/2024
End Date: 12/31/2024
This study has received approval from the University of Hertfordshire. Expiration date: 12/31/2024.
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa; OCD, Body Dysmorphic Disorder, Hoarding Disorder, Hair-Pulling Disorder, Skin-Picking Disorder, and Tourette’s Syndrome
Participant Requirements
Gender: All genders
Age: 18+
Travel: None.
Compensation
There is no financial compensation, but participants will be given access to a list of resources recommended by CDC, NHS and WHO.
Study Information
Study Involves: Complete an online survey.
Description of Services:
The research aims to investigate the relationship between flexibility in thinking, treatment adherence, and psychological well-being in individuals with compulsive and eating disorders, such as obsessive-compulsive disorder, health anxiety, eating disorders, skin-picking disorder, or hoarding disorder. The study will involve inviting participants with a range of mental health disorders to complete a short (up to 30-minute) online cross-sectional survey. The questionnaires cover basic demographic information and topics related to the research question, including treatment adherence, psychological well-being, cognitive flexibility, and personality traits. All data I plan to collect will be treated with the utmost confidentiality. All collected data will be anonymized. The project will be run in accordance with the research codes and conduct outlined by the British Psychological Society and Hertfordshire University research policies and procedures.
Research Study: Eating Behavior Treatment Study
Contact Information
Phone: (240) 281-1475
Study Location: 401 Quarry Rd Stanford, CA 94305
Website: http://eatingbehaviortreatment.com/
Research Setting
Community Mental Health, Hospital with Separate Setting, Online Survey
Study Period
Start Date: 5/15/2023
End Date: 5/15/2024
IRB Expiration Date: 5/15/2024
Diagnosis Researched
Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, Purging Disorder
Participant Requirements
Gender: Women
Age: 18-34 years old
Travel: Yes: Study participation is in-person on Stanford University campus.
Compensation
Up to $305
Study Information
Study Involves: 1. Initial interest/intake questionnaire
2. Pre-eligibility interview (follow-up on questionnaire)
3. Official eligibility interview (diagnostic interview)
4. Baseline in-person assessment (surveys, MatLab tasks, fMRI prep & scheduling)
5. Baseline fMRI scan
6. Randomization to one of two 8-week one-hour group treatments
7. Post-participation interview
8. Post-participation in-person assessment (surveys, MatLab tasks, fMRI scheduling)
9. Post-participation fMRI scan
10. 6-month follow-up assessment (interview & at-home surveys)
Description of Services: This is a randomized control trial comparing two eating disorder group treatments. Treatment is designed to improve functioning and reduce eating disorder symptoms. Participants complete interviews, in-person assessments, and fMRI scans in advance of eight weeks of 1-hr group treatment. Post-treatment, participants re-complete the interviews, assessments, and scans, and are then contacted a final time 6-mo later for an interview and at-home surveys.
Research Study: Efficacy of Juniver, a digital self-help intervention, on symptoms of eating disorders: A randomized controlled trial.
Contact Information
Contact Name: Caroline Summers
Email:
Country of Study: US and UK
Website: https://www.junivertrial.com/
Research Setting
Online Survey
Study Period
Start Date: 12/25/2023
End Date: 10/30/2024
This research has received approval from the Kings College London Research Ethics Committee.
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa, OSFED.
Participant Requirements
Gender: All genders
Age: 16+
Travel: None
Additional Information:
Inclusion Criteria
– Aged 16 or over
– Live in the UK or the US
– Any presence and severity of any eating disorder(s): Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, Other Specified Feeding and Eating Disorders (OSFED), Avoidant Restrictive Food Intake Disorder (ARFID) and Unspecified Feeding or Eating Disorder (UFED) as measured by the EDE-Q and using item-based algorithms to determine the potential presence of one of these eating disorders
– Able to provide informed consent
– Willing to provide full contact details including a UK or US address, phone number and email address
– Willing to provide contact details for a health care professional with whom they are registered (e.g., a general practitioner or primary care physician) and who the study team can contact if they are concerned about their well-being.
Participants will complete an online eligibility/screening questionnaire. If meeting initial eligibility criteria, they would complete a more detailed baseline assessment and be asked for their contact details and contact details of a health professional with whom they are registered. If they still appear eligible after completing all baseline measures, the Study Coordinator would then contact the health professional named by the participant to alert them to the potential participation of their patient, and ask the health professional to let the study team know within 7 days if the patient is not registered with them or they have any concerns about their participation.
Over the 7-day period, the Study Coordinator would also email the potential participant and ask them to confirm their date-of-birth, and text them and ask them to reply confirming receipt. As noted, these checks are intended to ensure participants can be contactable if needed during the study period, are genuine and not ‘bots’ signing up electronically, and are over age 16.
If participants respond via email and text, and there are no concerns raised by the health professional they listed, they would be randomized 7-10 days after signing up for the study.
If they do not respond via email and text, or a concern is raised by the listed health professional, the participant would not be enrolled and would be advised for the reason for exclusion.
Exclusion Criteria
– Lack of access to an iPhone – as Juniver is currently only available for use on the iPhone system.
– Partaking in any medically-driven special diets (e.g., linked to Coeliac, Crohn’s, PCOS, type 1 or type 2 diabetes) – as these individuals would require more specialist dietary advice than the Juniver program can safely provide. Individuals with these conditions who are not on special diets would be eligible to enroll.
– Severe depression as measured by PHQ score > 20 – if this is detected, the individual would be encouraged to seek support for low mood with provision of resource options and direct contact by the Study Coordinator to encourage help-seeking. The health professional listed by the potential participant would also be alerted of their high PHQ score and asked to follow-up with the patient.
– Active suicidal intent or plan – if this is detected, the individual would be encouraged to seek support for suicidality with provision of resource options and direct contact by the Study Coordinator to encourage help-seeking. The health professional listed by the potential participant would also be alerted of their suicidality and asked to follow-up with the patient.
– Body Mass Index (BMI) <15 – as this level of extreme underweight suggests a need for more intensive treatment than digital self-help intervention. If this is detected, the individual would be encouraged to seek support with provision of resource options and direct contact by the Study Coordinator to encourage help-seeking. The health professional listed by the potential participant would also be alerted of their suicidality and asked to follow-up with the patient. - Emergency hospital visit or admission within the last month for an eating disorder or other mental health concern – if this is reported, the individual would be encouraged to seek support with provision of resource options and direct contact by the Study Coordinator to encourage help-seeking. The health professional listed by the potential participant would also be alerted and asked to follow-up with the patient. If individuals report a PHQ score >20 during the trial, or disclose suicidality during the trial, the Study Coordinator would contact them to re-share the list of resource options and encourage them to seek help. The Study Coordinator would also write to alert their listed health professional. Trial data collection would stop and the participant would be withdrawn for the purposes of data collection, however, they would continue to have access to Juniver.
If individuals report emergency hospital visits or admission, or their BMI drops below 15, they would also be contacted by the Study Coordinator, reminded of the resource options for seeking help, encouraged to seek help, and have their health professional informed of our concerns. The same process would occur if someone reports an average of 4 or more episodes of vomiting or laxative misuse per day on the EDE-Q (i.e., 112 episodes / month). In these situations, the participant would not be withdrawn from the trial.
Compensation
Free access to the Juniver program.
Those participants who take part in the interview stage of the study would be provided with a £25 voucher to acknowledge their additional time and contribution to ongoing program development.
Description of Services:
Project aims and objectives:
This project aims to assess the efficacy of the Juniver program on symptoms of eating disorders via a randomized controlled trial. The Juniver program is a self-help intervention for eating disorders delivered digitally, through an iPhone app. It features three components: an evidence-based curriculum, interactive tools, and moderated peer support groups.
These three components integrate the evidence for (a) Cognitive-Behavioural Therapy (CBT) and Dialectical Behaviour Therapy for eating disorders; (b) Just-in-Time Adaptive Intervention; and (c) peer mentorship as an adjunct intervention for the treatment of eating disorders.
The program was developed by the Juniver team made up of people with lived experience with eating disorders and professional experience in digital health, a panel of neuroscientists and experts specializing in eating disorders, and direct research with 500 participants.
The proposed research aims to investigate the impact of the Juniver program on self-reported eating disorder symptoms, as well as on symptoms of depression, anxiety, psychosocial impairment associated with eating disorders, and perceived stress. This will occur via a randomized controlled trial comparing Juniver to a wait-list control condition over a 12-week period, with further evaluation of the effects of Juniver up to 24-weeks. The trial is funded by an Innovate UK grant award for Inclusive Innovation.
Primary Objective
• To assess the effects of the Juniver program on eating disorder symptoms, as quantified by the Eating Disorder Examination Questionnaire (EDE-Q), between the Juniver Group and Control Group across a 12-week timeframe. Further analyses to assess the effects of Juniver on eating disorder symptoms across a 24-week timeframe in the Juniver group.
Secondary Objectives
• To assess the effects of the Juniver program on depression symptoms, measured by the Patient Health Questionnaire-9 (PHQ- 9), between the Juniver Group and Control Group across 12 weeks. Further analyses to assess the effects of Juniver on depression symptoms across a 24-week timeframe in the Juniver group.
• To assess the effects of the Juniver program on anxiety symptoms, measured by the Generalized Anxiety Disorder-7 questionnaire (GAD-7), between the Juniver Group and Control Group across 12 weeks. Further analyses to assess the effects of Juniver on anxiety symptoms across a 24-week timeframe in the Juniver group.
• To assess the effects of the Juniver program on psychosocial impairment due to an eating disorder, measured by the Clinical Impairment Assessment (CIA 3.0), between the Juniver Group and Control Group across 12 weeks. Further analyses to assess the effects of Juniver on psychosocial impairment symptoms across a 24-week timeframe in the Juniver group.
• To assess the effects of the Juniver program on perceived stress, measured by the Perceived Stress Scale (PSS-4), between the Juniver Group and Control Group across 12 weeks. Further analyses to assess the effects of Juniver on perceived stress across a 24- week timeframe in the Juniver group.
• To assess the acceptability of the Juniver program by users, as measured by a Net Promoter Score (“Based on a scale from 0 to 10, how likely are you to recommend the Juniver app to others who struggle with an eating disorder?”).
Design
The study will include a sample of 300 participants aged 16 years and over, with participants randomly allocated at a 1:1 ratio to the immediate Juniver group (n=150) or wait-list control group (n=150). Participants assigned to the Juniver group will gain access to the app starting on their respective Week 1. In contrast, participants in the control group will receive access to the app at the conclusion of their respective Week 12. The Juniver group will complete outcome measures at Week 4, 8, 12, 16, 20 and 24 while the control group will complete measures at Week 4, 8 and 12. Statistical analysis will involve linear mixed models to compare differences in outcome measures in the Juniver group compared to the control group, including any overall between-group differences and any differences in how variables change over time.
It is hypothesized that the Juniver group will report statistically significant reductions in eating disorder symptoms, as measured by the Eating Disorder Examination Questionnaire (EDE-Q), from baseline to weeks 12 and 24. It is also hypothesized that the Juniver group will exhibit a more substantial reduction in eating disorder symptoms than the waitlist control group over the course of 12 weeks.
For our secondary hypotheses, we hypothesize the Juniver group will have a more pronounced reduction in depression symptoms, measured by the Patient Health Questionnaire-9 (PHQ-9), compared to the control group over the course of 12 weeks; that the Juniver group will exhibit a greater decrease in anxiety symptoms, measured by the Generalized Anxiety Disorder-7 (GAD-7) questionnaire, compared to the control group over the course of 12 weeks; that the Juniver group will demonstrate a more substantial decline in clinical impairment symptoms, measured by the Clinical Impairment Assessment 3.0 (CIA 3.0), compared to the control group over the course of 12 weeks; and that the Juniver group will demonstrate a more substantial decrease in perceived stress, measured by the Perceived Stress Scale (PSS-4) (PSS-4), compared to the control group over the course of 12 weeks.
Exploratory analyses will consider if baseline self-reported readiness to change predicts use of, and outcomes from, the Juniver program.
We will analyze use of the app and assess the acceptability of the app.
Semi-structured virtual interviews will be conducted with a subset of participants from the Juniver group who provide additional consent for interview participation. These interviews will delve into the participants’ personal experiences and perspectives of Juniver, allowing us to gain insights and inform refinement of the intervention. Individuals who participate in interviews will be reimbursed for their time with a £25 voucher.
Research Study: Investigating the Role of Friendships in Eating Disorder Recovery
Contact Information
Contact Name: Marianne Rouleau-Tang
Email:
Research Setting
Community Mental Health, Online Survey
Study Period
Start Date: 2/20/2024
End Date: 7/31/2024
This study has received approval from the Research Ethics Board (REB) from the University of Toronto. Expiration Date: 2/5/2025
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa, OSFED; Any individual who has recovered from an Eating Disorder.
Participant Requirements
Gender: All genders
Age: 18+ (Adults)
Travel: None
Compensation
$5.5 CAD ($4.10 USD) for survey, $16.55 CAD ($12.3 USD) per hour for the interview.
Study Information
Study Involves: Completing a 15-minute virtual screening questionnaire (Includes the EDE-Q and other personal questions).
Eligible participants will be asked to complete a virtual interview, answering questions about their experiences with friendships during their eating disorder recovery.
Description of Services: Researchers at the University of Toronto are seeking participants for a study investigating the role of friendships in Eating Disorder Recovery. This study involves completing one questionnaire and a one-hour-long interview session. Your valuable insights can help us understand how friendships influence recovery outcomes.
Research Study: The Lived Experiences of People in Larger Bodies in Eating Disorder Treatment
Contact Information
Contact Name: Lily Hiott-Millis
Email:
Research Setting
Online Survey
Study Period
Start Date: 4/17/2024
End Date: 9/30/2024
IRB Expiration Date: 4/17/2025
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa, OSFED; Individuals in larger bodies
Participant Requirements
Gender: All genders
Age: 18+
Travel: None.
Compensation
$20 gift card
Study Information
Study Involves: 1-hour long Zoom interview.
Description of Services:
Not many studies have focused on the treatment experiences of adults in larger bodies with eating disorders. I aim to begin to correct this with help from volunteer participants who have had this experience. I would like to learn about your experiences in treatment through an interview which should take about 40 to 60 minutes.
Research Study: Sleep & Eating Study
Contact Information
Contact Name: Nicole Johnson
Email:
Website: https://eatingbehaviorslab.wixsite.com/eatingbehaviorslab/about-4
Research Setting
Online Survey
Study Period
Start Date: 7/25/2023
End Date: 8/16/2024
IRB Expiration Date: 8/16/2024
Diagnosis Researched
Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, Adults with current binge eating
Participant Requirements
Gender: Women
Age: 18 years and older
Travel: None
Additional Information: 1. At least 18 years old
2. Assigned female at birth (including gender-diverse adults)
3. Must have access to a smartphone or mobile device
4. Must have current binge eating, which is determined when potential participants complete the eligibility screening.
Compensation
If participants complete the entire study, they will be compensated with up to $25 in the form of an Amazon gift card. In addition, if they complete at least 85% of the daily recordings over the 14 days, they will be entered into a raffle for the chance to win one of ten $25 gift cards (in addition to the base compensation). If they are a student at the Illinois Institute of Technology, they can also be compensated with 3.5 Sona course credits.
Study Information
Study Involves: Researchers in the Department of Psychology at the Illinois Institute of Technology are seeking participants for a research study examining sleep and other psychological factors that may contribute to eating disorder symptoms, such as binge eating.
We are recruiting individuals who are at least 18 years old, who were assigned female at birth (including gender-diverse adults), and who are currently experiencing binge eating to participate in this study. If interested, participants must complete an online questionnaire to determine their eligibility to participate in this study.
If eligible, participants will first complete an online questionnaire to gather baseline information. Over the next 14 days, they will use their mobile device to complete daily recordings of their sleep, emotions, stressful events, eating disorder behaviors, and perfectionism thoughts. Participation in this study should take a total of approximately 3.5 hours over a span of 15 days.
Research Study: Teen Health Study
Contact Information
Contact Name: Kristen Gee
Email:
Study Location: 401 Quarry Rd., Stanford, CA 94304
Website: https://teenhealthstudy.weebly.com/
Research Setting
Community Mental Health
Study Period
Start Date: 11/23/2021
End Date: 12/31/2024
IRB Approved
Diagnosis Researched
Anorexia Nervosa, Bulimia Nervosa
Participant Requirements
Gender: Women
Age: Parents & their 12-16 year old daughters
Travel: All study visits will be in person at Stanford University.
Additional Information: A parent who has a history of/current anorexia nervosa or bulimia nervosa and their 12-16 year-old female daughter who has not experienced any sort of disordered eating.
Compensation
$400
Study Information
Study Involves: Study tasks include interviews, surveys, computer tasks, and an fMRI brain scan.
Description of Services:
The Teen Health Study is being led by Dr. Eric Stice and his team in the Psychiatry Department at Stanford University. Researchers are investigating the biological risk factors for eating disorders. This research study will help to inform future eating disorder prevention programs. Parents will be involved in an interview about eating habits and driving their daughters to and from Stanford. Daughters will be involved in 7 in-person visits over the course of 5 years. An fMRI brain scan will be conducted once and then follow-up visits including an interview, surveys, and computer tasks will occur.
Special Topics
Co-Occurring Conditions
Research Study: Anxiety in eating disorder populations: A comparison with the general community
Contact Information
Contact Name: A/Prof Litza Kiropoulos
Email:
Website: https://melbourneuni.au1.qualtrics.com/jfe/form/SV_3Q4Xq5SH8H1NK3s
Research Setting
Online Survey
Study Period
Start Date: 1/1/2024
End Date: 12/31/2024
IRB Expiration Date: 6/13/2026
Diagnosis Researched
Anorexia Nervosa, ARFID, Binge Eating Disorder, Bulimia Nervosa, OSFED; Individuals with a diagnosis of cancer of multiple sclerosis
Participant Requirements
Gender: All genders
Age: 18+
Travel: None.
Compensation
Participants will have a chance to win 1 of 11 AUD$100 e-gift cards for completing both Time 1 and 2 surveys and another 1 of 11 AUD$100 e-gift cards after completing Time 3.
Study Information
Study Involves: Completing a short online questionnaire at three time points.
Description of Services:
Researchers at The University of Melbourne are interested in psychological factors that contribute to the development and maintenance of anxiety in those with a lived experience of an Eating Disorder.
Participation involves filling out a short online questionnaire at three time points, on your phone or your computer. Participants will have a chance to win 1 of 11 AUD$100 e-gift cards for completing both Time 1 and 2 surveys and another 1 of 11 AUD$100 e-gift cards after completing Time 3. Participation is voluntary and all data will remain confidential.
Research Study: Latin American Trans-ancestry Initiative for OCD genomics (LATINO)
Contact Information
Contact Name: Eric Storch
Email:
Website: http://www.latinostudy.org/
Research Setting
Online Survey, College/University
Study Period
Start Date: 1/1/2022
End Date: 12/31/2026
IRB Expiration Date: 4/26/2026
Diagnosis Researched
Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, With co-occurring Obsessive-Compulsive Symptoms (current or in the past).
Participant Requirements
Gender: All genders
Age: 7-89 years old
Travel: None. Interviews are done via Zoom.
Additional Information: To participate in LATINO you must:
Have experienced symptoms of OCD now or in the past (even if you did not seek treatment)
Have at least one grandparent who was born in Mexico, Central America, South America, or the Caribbean.
Be between the ages of 7 and 89 years.
Given the high co-occurrence between symptoms of eating disorders and OCD, we are hoping to recruit individuals who experience both eating disorders and OCD symptoms (either current and/or past) in order to improve the representativeness of our sample, and to understand how certain clinical factors may relate to genetic make-up.
Interested individuals can complete the following link and then will be contacted:
https://redcap.research.bcm.edu/redcap/surveys/?s=4EFT77APTME3MLRA
Compensation
$25 for the one-time assessment
Study Information
Study Involves: The Latin American Trans-ancestry INitiative for OCD genomics (LATINO) is an NIH-funded research study with the goal of identifying factors contributing to the development of OCD in individuals who identify as Latino/Hispanic. It is being conducted by a group of researchers throughout the United States and Latin American countries. The lead sites are at Baylor College of Medicine and the University of North Carolina.
We are recruiting individuals who have had, or think they might have, OCD and are of Latin American/Hispanic ancestry defined as having at least one grandparent who was born in Mexico, Central America, South America, or the Caribbean.
Interested participants will answer questions about their experience with OCD and other problems over a 2 hour ZOOM meeting, and provide a spit sample for DNA (this will be mailed to you).
There are 4 simple steps to sign up for LATINO:
Provide consent for yourself or your minor child
Complete the ~5 minute eligibility survey.
https://redcap.research.bcm.edu/redcap/surveys/?s=4EFT77APTME3MLRA
Someone will reach out to schedule you for an interview (by Zoom, phone or in person)
Send a DNA sample through the mail using our spit kit
We would like to emphasize that you can stop taking part in LATINO at any time.
Description of Services: Obsessive-compulsive disorder (OCD) is a psychological condition impacting approximately 1-2% of the world population. Characterized by distressing intrusive thoughts and unwanted repetitive behaviors, OCD can have wide-reaching implications for both individuals with OCD and their families. While the impacts of this condition are well studied, what causes OCD remains less clear. Current evidence suggests that genetics play a role in the development and maintenance of OCD, however the exact genes and biological mechanisms contributing remain elusive. A better understanding of the role of genetics in this condition would greatly improve the ability to detect and diagnose the disorder while allowing treatments to be tailored to an individual’s unique genetic code. Termed precision medicine, this tailored approach has been explored for various psychological disorders, but genetic research on OCD has lagged behind until recently. Now, there is a worldwide study of OCD genetics with more than 46,000 people with OCD participating. However, this remarkable initiative is limited by almost exclusively representing those of European ancestry (>95% of current participants). This Eurocentric bias in would likely result in OCD genetic findings being more accurate for individuals of European ancestry than other ancestries, thereby contributing to health disparities in potential future applications of genomics in precision medicine.
Recently, an interdisciplinary team led by Drs. James Crowley (University of North Carolina at Chapel Hill) and Eric Storch (Baylor College of Medicine) was funded by the National Institute of Mental Health to carry out an ambitious project to address this lack of diversity. We aim to achieve this by recruiting and obtaining saliva samples for DNA from 5,000 Latino/Hispanic/Brazilian individuals (defined as having at least one Latino/Hispanic/Brazilian grandparent). Including a more diverse sample will further advance our ability to detect, diagnose, and treat individuals of Latino ancestry. Furthermore, mapping the OCD-specific genes for Latinos and comparing the results to those of European ancestry contributes to a more comprehensive and generalizable understanding of the common human genetic code, which will help us understand and treat those of any ancestry.
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If you are conducting research and are interested in recruiting participants in the eating disorder community, submit your study to be included in our listing.