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.
Endometriosis Foundation of America (EndoFound) provides information regarding research studies sponsored or funded by a broad range of public and private organizations around the world.
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.
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
The Impact of Endometriosis and Persistent Pelvic Pain on Intimacy and Relationship Wellbeing in Couples
Purpose: This study focuses on the emotional and physical intimacy and relationship wellbeing in couples living with endometriosis. Emotional intimacy refers to aspects of mood, emotions or feelings that people may experience in regard to their relationship and can vary over time. Physical intimacy is characterized by friendship, platonic love, romantic love, or sexual activity. The study will also gather information regarding the different physical and emotional symptoms of endometriosis and the types of treatment that women may be engaged in. We are also interested in understanding how much information regarding their experience of endometriosis women choose to disclose to their partners.
Methods: Information is gathered via an anonymous online survey that asks questions about your general mood; diagnosis, symptoms and treatment of endometriosis; emotional and physical intimacy; and your relationship satisfaction and goals. This survey takes approximately 20 to 45 minutes to complete. You can save your responses and return to complete the survey over shorter time periods.
If you would like to participate in the study, you can express your interest by emailing Dr Leesa Van Niekerk at Leesa.VanNiekerk@utas.edu.au and provide an email contact for yourself and your partner (with their permission). You will both be emailed an online link that will direct you to the survey and each member of a couple will be provided with their own unique numerical code that will provide access to the survey questions. These unique numerical codes will be used to link the surveys completed by each member of a couple.
Each person’s survey responses are linked to their unique numerical code and are not identifiable by your name or email address to ensure confidentiality. Each member of a couple will not be able to access their partner’s responses to ensure confidentiality.
Eligibility and Participation Criteria: Women who experience symptoms of endometriosis, aged between 18 and 47 years, and their partners are invited to participate in this study. It is open to international respondents.
A survey of the knowledge of endometriosis in the community
Purpose: The objective of this project in evaluating knowledge of endometriosis aims not only to assess existing understanding of the disease, but to also increase the knowledge base of the general population and medical professionals for better patient care and sharp judgement in the diagnosis and management of women with endometriosis.
Eligibility and Participation Criteria: Anyone of any age and knowledge base is able to participate voluntarily in this survey and we encourage you to share it amongst your family and friends, both male and female.
Methods: An anonymous online survey which will take approximately 5 minutes to fill out.To participate in this study, please visit the following URL: https://www.surveymonkey.com/r/ENDOAWARE
Ms Alia Nabila Tun-Ismail, Dr Mathew Leonardi, Dr Mike Armour, Associate Professor George Condous
University of Sydney Nepean Clinical School
Invalidation of Medical Symptoms by Healthcare Providers and Partners of Individuals with Endometriosis
Purpose: The patient-physician relationship in endometriosis is significant, particularly for patients struggling to make sense of their symptoms, and is positively related to health outcomes. A positive patient-physician relationship and greater perceived physician support is therefore paramount to the overall health of patients. Understanding and mapping negative types of patient-provider interaction will help identify appropriate targets for intervention at the patient, provider, and system level. We anticipate that this work will provide the foundation for the future development and testing of communication skills training for non-endometriosis gynecologists that may help prevent some of the psychological harm that may ensue for patients during their long and frustrating search for a diagnosis. Additionally, these findings will allow mental health specialists a framework with which to understand the emotional struggles and psychological burden of patients with endometriosis that are specific to these negative patient-provider interactions, which can guide therapeutic aims.
Methods: This is an anonymous online research survey in which participants will fill out questions about their demographics, endometriosis symptoms, negative patient-provider experiences, and romantic relationships (will take approximately 30 minutes to complete).
To participate in this study, please visit the following URL: https://rutgers.ca1.qualtrics.com/jfe/form/SV_86TnTKNLxI8k3DD
Eligibility and Participation Criteria: Participants must have a diagnosis of endometriosis (suspected or surgically-confirmed) and must be at least 18 years old. Participants can be from outside the United States and do not have to currently be in a romantic relationship to complete the survey.
Allyson C. Bontempo, M.C.I.S., PhD Candidate
Rutgers, School of Communication and Information
The Effect of Reproductive Hardship on Individual and Relational Identities
Purpose: To understand the experience of reproductive difficulty and its effects on people’s identity and relationships.
Eligibility and Participation Criteria:
- Be over the age of 18;
- Be in a committed romantic relationship in which you have not yet conceived a child;
- Have been trying to conceive unsuccessfully for at least one year, OR you and/or your partner have sought medical assistance to become pregnant, OR you and/or your partner have been medically diagnosed with infertility;
- Have access to an Internet connected device;
- Be able to read and write in English.
Methods: Anonymous online survey (will take approximately 30 minutes to complete).
To participate in this study, please visit the following URL:
Deborah Yoon, PhD Candidate
Rutgers, School of Communication and Information
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:
A survey to understand the attitudes of endometriosis patients towards new disease management options
Purpose: We are working to develop a new medical device for endometriosis. We would like to develop this disease management option with those who have endometriosis, not just for them. Therefore, we have partnered with the Endometriosis Association of Ireland research group to co-design a survey to learn more about your condition and your attitude to a new disease management option. Your involvement in this research at this early stage ensures that we develop a medical device which is grounded in your reality and meets your needs.
Eligibility and Participation Criteria:
Your decision to complete this survey online and press SUBMIT at the end of the survey implies that;
- you are living with symptoms of and/or a diagnosis of endometriosis
- you are over 18 years of age
- you have given your consent to take part in this research
The survey is anonymous and should take only 15 minutes to complete. To participate please click https://docs.google.com/forms/d/e/1FAIpQLSc7G00MMMXK1dyFffouqHx5FM9-NUVYxv4AN_dmcPz8b2EHzw/viewform
Contact:Dr Siobhán Kelleher (firstname.lastname@example.org)