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.
Do you have endometriosis and have experienced pain related to IVF ?
Researchers from Lausanne University Hospital in Switzerland are conducting a study to understand the pain and quality of life impact of IVF in patients with endometriosis. The goal of this study, called FertiPain, is to explore how IVF affects the pain experience, overall well-being, and satisfaction with healthcare providers in individuals with endometriosis. By participating, you will contribute valuable insights that may improve care and support for future patients.
In this brief survey (approximately 5-8 minutes), we will ask questions about your pain experience and related aspects of quality of life during IVF. Your participation is completely anonymous.
Access the survey by scanning the QR code or using the following link: Survey Link
Thank you for your participation !
For more information, please contact : endometriosis@chuv.ch
Harvard University Research
Purpose: Researchers from Harvard University are conducting a study that looks at the impact of minority stressors such as stigma and discrimination on mental health in people with disabilities and chronic conditions. We are looking for participants who are 18+ and identify as having a disability or chronic condition.
If you are interested, the study can be found here: bit.ly/smpdstudy
For more information, please contact: melissashang@college.harvard.edu
The impact of disclosure of female predominant chronic conditions on workplace performance
You are invited to voluntarily participate in a research project studying the impact disclosure of female-predominant chronic conditions has on workplace performance.
You will be asked to complete a survey, after which, your results will be compiled as anonymous data. Demographic information will be retained; however, attention will be made that identities remain anonymous. This study will take no longer than 10 minutes to complete. Participation will remain anonymous and no identifying data will be collected.
Your participation in this study is invaluable. Implications from this research could provide practical recommendations for fostering positive outcomes and mitigating potential negative consequences for women dealing with female predominant conditions at work.
All answers will be deleted after all data has been collected and three years have passed after any eventual publication. All information will be used for research purposes only. You can withdraw at any time without consequence.
Please contact apb2021@jagmail.southalabama.edu or the Institutional Review Board at the University of South Alabama at (251) 460-6308 if you have questions about your rights as a research subject.
Thank you for your consideration, please click the survey link below to read and agree to the informed consent and begin the survey.
Link to survey: https://southalabama.az1.qualtrics.com/jfe/form/SV_b1RZRnfwzF498mW
Alana Bell, PhD
University of South Alabama, USA
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.
Contact: ohs@health.ucsd.edu
Principal Investigators: Matthew S. Panizzon, PhD & Emily G. Jacobs, PhD
Post Date: June 7, 2023
HERstudy
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.
Contact: endoresearch@jbpierce.org.
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.
Contact: herstudy.endometriosis@gmail.com.
Principal Investigator: Lacy Alexander, Ph.D.
Click here to sign-up for more information.
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
Citizen Endo
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:
iOS: https://itunes.apple.com/us/ap
Contact:
citizenendo@columbia.edu
Department of Biomedical Informatics
Columbia University Medical Center
NextGenJane
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.
Contact: research@nextgenjane.com
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 │ bce@childrens.harvard.edu
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 cje@live.co.za
Past Studies
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.
Contact:
Link to participate: https://redcap.ctsi.ufl.edu/redcap/surveys/?s=FWDNKD8KJN
Email contact to obtain more information: DN-ASPIRE-Lab@dental.ufl.edu
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