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.
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.
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:
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.