Understanding endometriosis & the ROSE study
If you’re a woman living with endometriosis or suspect you might have it, you may be eligible to participate in the Research OutSmarts Endometriosis (ROSE) study. By participating, you could help researchers develop a better way to diagnose and treat the condition.
What is Endometriosis?
- Endometriosis occurs when the endometrium, the tissue that lines the uterus and is shed every month, grows outside of the uterus on other organs or structures in the body
- Nearly 5.5 million women and girls suffer from endometriosis in North America alone
- Symptoms can range from painful menstrual cramps to debilitating abdominal and pelvic pain and infertility. While the severity of endometriosis varies, the more extensive forms of the disorder can cause severe pain and disability
- Approximately 40% of female infertility is associated with endometriosis
The ROSE research team (winner of the 2018 Northwell Innovation Challenge) is a group of Feinstein Institutes scientists and professionals who use several innovative approaches to study endometriosis and other women’s reproductive health disorders. Our goals are to:
- Reduce the time between symptoms of endometriosis and diagnosis
- Develop noninvasive (nonsurgical) methods to diagnose endometriosis
- Discover improved treatments for women with endometriosis
- Better understand the genetic basis of endometriosis and relate it to what is occurring at the cellular level in the disease, with emphasis on the role of stromal cells and the immune system
- Alleviate the pain and suffering among women with endometriosis
By participating in the ROSE study, you can help us reach these goals.
How can I participate?
Complete an interest form or call (516) 562-3636 (ENDO) to find out how you can participate in the ROSE study.
If you are a woman with a diagnosis or suspicion of endometriosis who is over the age of 18 and not pregnant or breastfeeding, you will be asked to:
- Answer health/gynecological questionnaires
- Provide a sample of menstrual effluent (ME), collected in the privacy of your home
- Allow researchers to collect excess endometrial tissue samples removed during surgery (optional)
If you are a woman without endometriosis who is over the age of 18 and not pregnant or breastfeeding, you will be asked to:
- Answer health/gynecological questionnaires
- Provide a sample of menstrual effluent (ME), collected in the privacy of your home (optional)
Frequently asked questions
Yes! The ROSE study enrolls women who are symptomatic as well as those who are surgically diagnosed.
Initial telephone screening and online paperwork can take less than one hour. Menstrual effluent collections may take up to one night.
The study may go on indefinitely and we may ask you for updated information and/or samples.
Yes! Participants will be compensated for providing menstrual flow samples. There will be no out-of-pocket expenses to participate. We will provide prepaid shipping materials.
Yes! Women who live outside of the New York metropolitan area (within North America) can participate and provide samples through express mail and FedEx (prepaid).
We take many steps to protect your privacy and to prevent misuse of your health or genetic information. This includes removing identifying data (for example, your name or date of birth) and assigning numbers or barcodes to your sample and data. The key that links a participant's identifying data and code numbers is kept secure in locked files. In addition, we have a Certificate of Confidentiality from the National Institutes of Health that ensures we cannot be forced to disclose information, even under subpoena.
Yes. You may withdraw at any time by contacting the ROSE team.
Meet the research team
Director, Faculty Affairs, Feinstein Institutes for Medical Research
Professor, The Center for Biomedical Science, Feinstein Institutes for Medical Research, Professor and Associate Dean, Elmezzi Graduate School of Molecular Medicine, Professor, Molecular Medicine and Obstetrics & Gynecology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell
Margaret DeFranco, RN
Co-Chief - Ambulatory Care & Women's Health-PCAP of Obstetrics & Gynecology - Ambulatory Care and Women's Health Program - PCAP, Long Island Jewish Medical Center
Co-Chief - Ambulatory Care & Women's Health-PCAP of Obstetrics & Gynecology, North Shore University Hospital
Assistant Professor, Laboratory of Stem Cell Niche Biology, The Karches Center for Oncology Research, Feinstein Institutes for Medical Research
Director, Pediatric Hemato/Oncology-HistioCare, Children’s Cancer Center, Staten Island University Hospital, Assistant Professor, Pediatrics & Molecular Medicine, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell
Laura Warren, MD
PhD Candidate 2020
Collaborators & supporters
- Endometriosis Foundation of America (EndoFound)
- Pelvic Rehabilitation Medicine
- Diva International