Research Participation Opportunities

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 Portrait of Dysmenorrhea & Pelvic Floor Therapy

• Age 18 or older
• English speaker living in the United States
• Experience menstrual pain or cramping (dysmenorrhea), with or without a formal diagnosis

National Program to Overcome Pelvic Pain Study (POPPY)

Researchers from the University of California, San Francisco (UCSF) are conducting a study to see whether women with pelvic pain can learn to practice special yoga or physical conditioning exercises to improve their pain.

You may be eligible to participate in the study if:

• You are a woman, 18 years or older, living in the continental United States.
• You experience chronic or frequent pelvic pain.
• You have access to a video-enabled electronic device (e.g., iPad, tablet, laptop, computer) for attending online classes, with on-camera participation required.

If you qualify for the study, you may:

• Complete diaries and questionnaires
• Participate in special interactive, online yoga or physical conditioning classes twice weekly for 8 weeks.

You will be modestly compensated for your time and receive yoga or physical conditioning props to use during free study classes and home practice.

If you are interested, please contact the Study Coordinator at pelvicpainstudy@ucsf.edu.

www.Pelvicpainstudy.org

Endo Healthcare Study

Purpose: 

• Explore how healthcare experiences can contribute to pain and psychosocial well-being for people with endometriosis
• Understand whether empathy from a healthcare provider contributes to these experiences
• Investigate how traumatic and discriminating healthcare experiences play a role in pain and psychosocial well-being

Eligibility: 

• Diagnosed with endometriosis
• English speaking
• Over the age of 18 years old
• Located in Canada, USA, United Kingdom, or Australia

Process: First, you’ll be asked to complete a short screening form to express your interest and assess your eligibility. If eligible, you will be sent a secure link via email to a one-time online questionnaire, taking approximately 45-60 minutes to complete. These links will be embedded with an ID number that will be used to keep your data anonymous. Surveys can be completed on your mobile phone, laptop, or tablet.

Complete our screening form my scanning the QR code in the poster or following this link: 

https://uottawapsy.az1.qualtrics.com/jfe/form/SV_9sKghKAV7z5Fd5k

Please contact our research team at reach.lab@uottawa.ca with any questions or comments!

Endo Couples Study

Purpose: 

• Better understand the individual experiences for people with endometriosis and their partners, including pain experiences, psychological well-being, quality of life, and caregiver burden
• Explore the role of endometriosis on relationship satisfaction for both members of the couple
• Investigate how perceived empathy plays a role in couples’ individual and shared experiences

Eligibility: 

• One member in the couple diagnosed with endometriosis
• English speaking
• Over the age of 18 years old
• Located in Canada or the USA

Process: First, you’ll be asked to complete a short screening form to express your interest and assess your and your partner’s eligibility. If eligible, you and your partner will each be sent a secure link via email to a one-time online questionnaire, taking approximately 45-60 minutes to complete. These links will be embedded with an ID number that will be used to keep your data anonymous. Surveys can be completed on your mobile phone, laptop, or tablet.

Complete our screening form my scanning the QR code in the poster or following this link: 

https://uottawapsy.az1.qualtrics.com/jfe/form/SV_0D7qdou7F9sctoy?Q_CHL=qr

Please contact our research team at reach.lab@uottawa.ca with any questions or comments.

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

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 not 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.