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Understanding endometriosis—the ROSE study

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. Symptoms can range from painful menstrual cramps to incapacitating 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. In addition, approximately 40% of infertility is associated with endometriosis. About 5.5 million women and girls suffer from endometriosis in North America alone.

A team of committed Feinstein Institutes for Medical Research researchers and professionals is conducting the Research Out-Smarts 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 the condition. The ROSE study won the 2018 Innovation Challenge award for the potential diagnostic test using menstrual effluent (ME).

Current diagnosis relies on pelvic exams and ultrasound imaging coupled with laparoscopic surgery. Women with more severe endometriosis often require surgical intervention to relieve symptoms and it is not uncommon for a woman to require repeat surgery. Hormone treatments may be effective in many women, but can have unpleasant side effects. Improved diagnostic methods and better tolerated and more effective medical therapies are needed.

Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this to what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system. Women both living with and without endometriosis can participate in the ROSE study to help us find answers for those who are suffering. We extend a special thank you to Endometriosis Foundation of America Diva International Inc., makers of The DivaCup.

Hear author, actress and television personality Padma Lakshmi talk about her endometriosis diagnosis, the urgent need for research—and her journey to healing. 

How to get involved

Women with a diagnosis of endometriosis over the age of 18 who are not pregnant or breastfeeding can become involved in the ROSE study. Each participant will be asked to:

  • Answer a health history questionnaire
  • Answer questions about how endometriosis impacts her life
  • Provide a DNA sample from either a blood sample (from the arm) or a cheek cell swab
  • Offer a sample of menstrual flow that can be collected at home using a simple procedure; this collection is optional
    • For women who are undergoing surgery or have had surgical treatment for endometriosis, allow ROSE study researchers to collect excess endometrial tissue samples (not needed for your diagnosis/treatment) removed during surgery

We would also like to study first-degree relatives (siblings, parents and/or children, both women and men) of women with endometriosis who do not have endometriosis. Each unaffected participant will be asked to:

  • Answer a health history questionnaire
  • Provide a DNA sample from either a blood sample (from the arm) or a cheek cell swab
  • Offer a sample of menstrual flow that can be collected at home using a simple procedure; this collection is optional

We are also enrolling women without endometriosis to participate as control or comparison subjects through the Feinstein’s Genotype and Phenotype (GAP) Registry. Each non-diagnosed participant will be asked to:

  • Enroll in the GAP
  • Answer a health history questionnaire
  • Provide a blood sample (from the arm)
  • Offer a sample of menstrual flow that can be collected at home using a simple procedure

Participants will be compensated for providing a menstrual flow sample. Women living in the New York/Long Island metropolitan area can schedule a study visit at any hospital within Northwell Health. Women not local to the area can still participate and complete study activities remotely, through email and express mail. Click the links below to see:

ROSE consents

GAP control consents

Research team

Peter K. Gregersen, MD

Professor & Director, Robert S. Boas Center for Genomics & Human Genetics
Feinstein Institutes for Medical Research

Professor, Molecular Medicine
Donald and Barbara Zucker School of Medicine at Hofstra/Northwell

Christine Metz, PhD

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

Tamer A. Seckin, MD

Specialties: Obstetrics and Gynecology
Margaret DeFranco, RN headshot

Margaret DeFranco, RN

Michael Ryan, headshot

Michael Ryan

Laura Warren, MD

PhD Candidate 2020