Research volunteers are critical to advancing our understanding of endometriosis. Individuals with endometriosis and family members may be eligible to participate in research studies. EndoFound lists current opportunities to participate in studies that we have been informed of. To learn more about how to participate in clinical studies for endometriosis, please read our beginner's guide to participating in endometriosis clinical trials.
A Dietary Intervention Study to Reduce Pain in People with Endometriosis
Purpose: Researchers from the Fred Hutchinson Cancer Center in Seattle, WA, are conducting a dietary intervention study which looks at the effects of a healthy diet on pain levels in people with endometriosis. We are looking for participants who may be assigned to either an intervention arm (healthy diet) or control arm (regular diet) for a 12-week period. In addition, we will also request the completion of questionnaires, small blood draws (for Seattle metro area participants only) and meetings with a study dietician. You may be eligible if you are ages 18-45 years and have endometriosis.
If you are interested in this study, please take the screening survey:
For more information, please contact:
Do you have an invisible disability?
Purpose: Researchers from the University of Toronto are conducting research to help people with invisible illnesses/disabilities navigate the workforce. The goal of the study is to examine the disclosure experiences of people with invisible illnesses/disabilities, including endometriosis. In this short study, we will ask you questions about your thoughts and behaviors around disclosure in the workplace. You will be asked to complete questionnaires and some brief demographic questions. For those that wish to participate, the survey will take between 5-8 minutes.
If you are interested in taking part in our survey, we would greatly appreciate your participation! The link is available below:
Thank you for your consideration!
Post Date: July 18, 2023
Ovarian Hormone Suppression & Cognition (OHS) Study
Purpose: The goal of the study is to examine the impact of ovarian hormone suppression treatments on the brain and cognition. Our participants are typically women with endometriosis and/or PCOS, and are starting medications like Elagolix/Orilissa, Lupron, Letrozole, Oriahnn or Myfembree. Assessments are conducted prior to the start of these medications, and then again, several months into their treatment. The study is funded by the National Institute on Aging. To be clear, this is NOT a clinical trial. Rather this is only an observational study that will not interfere in any way with the treatments you are given by your physicians. The study is run jointly by researchers at UC San Diego and UC Santa Barbara
Eligibility & Participation Criteria:
- Women 19–45 years old who:
- Are premenopausal
- Starting medications of hormone suppression (includes Elagolix/Orilissa, Letrozole/Femara, Lupron, Oriahnn, & Myfembree)
Time Commitment for Participant: UC San Diego La Jolla School of Medicine campus or UC Santa Barbara campus
- Women will be brought in for a study visit before starting hormone therapy and again 1-3 months after beginning treatment.
- Participation requires 2 visits to either site. We provide free parking, breakfast/lunch at your visit, pay gas mileage for those traveling 15-20 miles or greater one way and provide compensation for completing the study.
Principal Investigators: Matthew S. Panizzon, PhD & Emily G. Jacobs, PhD
Post Date: June 7, 2023
Endometriosis Symptom Impact Survey
Researchers from the University of Melbourne invite you to take part in a short online survey to learn more about which symptoms of endometriosis impact people the most. This study is anonymous and should take between 5-10 minutes to complete.
This survey is open to people:
who have a surgically confirmed diagnosis of endometriosis or who have suspected endometriosis (as per imaging findings)
- aged over 18 years
- currently experiencing endometriosis-related symptoms
- fluent in English and live in any country
- who are not currently pregnant
- who have not given birth in the past 12 months
This study has been approved by the University of Melbourne, Australia (Reference Number 2023-25369-39051-6)
Email firstname.lastname@example.org for more information about the study or head to our website for updates on the project https://medicine.unimelb.edu.au/research-groups/obstetrics-and-gynaecology-research/hickey-research-group/endometriosis-symptom-impact-survey-a-survey-study-about-the-impact-of-living-with-endometriosis-and-its-symptoms
Post Date: June 2, 2023
Purpose: We are conducting an anonymized research survey to better understand the effects of endometriosis pain treatments on fatigue. Although chronic fatigue is recognised as one of the most significant symptoms of endometriosis, it is still a widely neglected topic.
The anonymous survey should take approximately 15-20 minutes to complete. The results from this questionnaire will be analysed and published in academic journals and/or presented at conferences.
Eligibility: You are eligible to take part if you are above the age of 16 AND:
- Have confirmed endometriosis diagnose with imaging/surgery
- OR suspected endometriosis (see signs and symptoms here https://www.nhsinform.scot/healthy-living/womens-health/girls-and-young-women-puberty-to-around-25/periods-and-menstrual-health/endometriosis)
Contact: This survey is being led by Dr. Christine Bekos (Christine.email@example.com) and Kevin Kuan from the University of Edinburgh under the supervision of Professor Andrew Horne. EndoFatigue is running as part of the EXPPECT charity in Edinburgh.
This survey has been approved by the Edinburgh Medical School Research Ethics Committee: (22-EMREC-050)
Link to survey: (https://corexmsx3mfhpx69skzk.qualtrics.com/jfe/form/SV_3qQWuF9sJnMQmcS)
Post Date: July 29, 2023
Purpose: The Heart Endometriosis Research (HERstudy) project is the collaboration of two committed investigators at the Yale School of Medicine and Pennsylvania State University. The goal of the HERstudy is to understand why women with endometriosis are at a greater risk for cardiovascular disease. We examine two interventions: one to target endometriosis symptoms and one to target long-term heart disease risk. Our project has the potential to make an impact by identifying clinically relevant treatment options to decrease the cardiovascular disease burden in women with endometriosis. The specific aims of this study are:
- To determine the effects of estrogen suppression on endothelial function in women with endometriosis.
- To examine the effects of inflammation on vascular function in women with endometriosis.
- To determine the effects of synthetic hormone treatments (selective estrogen receptor modulators) and cholesterol-lowering medications (simvastatins) on endothelial dysfunction in women with endometriosis.
Time Commitment for Participant:
Yale School of Medicine/John B. Pierce Site: Participation requires 3 visits to the Pierce laboratory at Yale School of Medicine in New Haven, CT. We provide free parking, pay gas mileage for those traveling 20 miles or greater one way and provide compensation for completing the study.
Principal Investigator: Nina Stachenfeld, PhD.
Penn State/Noll Laboratory or Hershey Site: Participation requires 4 visits to the Noll laboratory at Penn State University in State College, PA or at the Clinical Research Center at the Penn State Hershey School of Medicine in Hershey, PA. We provide free parking, pay gas mileage for those traveling 20 miles or greater one way and provide compensation for completing the study.
Principal Investigator: Lacy Alexander, Ph.D.
The ROSE Study
Purpose: A team of committed Feinstein Institute researchers and professionals are conducting the Research OutSmarts Endometriosis (ROSE) study. The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis. More information on the recent work the research team has uncovered can be found here.
Time Commitment for Participant: Variable. Approximately 2-4hrs (telephonic screening and online paperwork)
Principal Investigator Contact and Institution: Feinstein Institute for Medical Research 516-562-3636
Purpose: The goal of the Citizen Endo project is to bridge the gap between what endometriosis patients actually experience and how doctors characterize the disease. As such, we aim to phenotype endometriosis according to patient's reports of their disease. This will help identify different sub-types of endometriosis. Researchers have already found that there is more than one phenotype of endometriosis by looking at histological samples from excised lesions, but these phenotypes do no correlate with disease stage or symptom severity. Through our app Phendo, a research and self-management smartphone app for endometriosis patients to self-track their symptoms, we collect data on how patients experience the disease day to day. With this data we can begin to identify similar groups of patients based on shared signs and symptoms. Having this information will ultimately enable better understanding of the disease and identifying more precise treatment and self-management strategies for women with endometriosis. More information can be found here.
Phendo App is available for both IOS and Android:
Department of Biomedical Informatics
Columbia University Medical Center
Purpose: NextGen Jane is developing a smart tampon that will hopefully be able to diagnose endometriosis from menstrual fluid extracts. Endometriosis is currently diagnosed via diagnostic laparoscopic surgery; adenomyosis, by imaging. NextGen Jane is working on a way to look for molecular signals in the endometrial lining you shed naturally, every month, as an alternative to surgery or imaging for detecting disease. More information can be found here.
Clinical Trial on Endometriosis Pain & Cabergoline
Purpose: Dr. Amy DiVasta at the Boston Children’s Hospital is studying the response of ongoing pain after treatment of endometriosis with cabergoline, a medication commonly used for hormonal imbalances in women of reproductive age. The NOTE-2 (Novel Treatments for Endometriosis) Study is a 6-month clinical trial and is currently being offered within the Boston Center for Endometriosis. Learn more about the study here.
Contact: Dr. Amy DiVasta
617-355-2212 │ firstname.lastname@example.org
Clinical Study on Transgender and Nonbinary People’s Experience of Living with Endometriosis
Purpose: there is little research on transgender and nonbinary people’s experience of living with endometriosis, as most studies focus on how the disease affects women. This hermeneutic phenomenological study byresearchers at Stellenbosch University is critical, as it may fill a gap in understanding this disease’s impact on transgender and nonbinary people. Transgender and non-binary indivuals’ stories are missing from mainstream societal narratives, which can make living with the disease even more difficult. Learn more about the study here.
Contact: Cheryl Eder at email@example.com
Pelvic Pain Experiences Study
Methods: This online survey study includes a one-time survey of 200 patients with pelvic pain. All potential participants will undergo an initial screening questionnaire following consent to participate in the study. The initial screening will include questions regarding pelvic pain, age, sex/gender, and country of origin. Individuals meeting eligibility criteria will be asked to proceed with the remaining survey questionnaires. The survey should take no longer than 30 minutes to complete.
Eligibility & Participation Criteria: Men and women aged 18 years and older with pelvic pain that has lasted 3 months or longer.
Link to participate: https://redcap.ctsi.ufl.edu/redcap/surveys/?s=FWDNKD8KJN
Email contact to obtain more information: DN-ASPIRE-Lab@dental.ufl.edu
Information on EndoFound.org is provided by study sponsors and investigators, and they are responsible for ensuring that the studies follow all applicable laws and regulations. Choosing to participate in a study is an important personal decision. Before you participate in a study, know the risks and potential benefits and discuss all options with your health care provider and other trusted advisors.