How to get involved

For additional information, please contact us at ROSE@northwell.edu or (516) 562-ENDO (3636).

Contact ROSE

Women with a diagnosis of endometriosis, over the age of 18, who are not pregnant, breastfeeding or currently using an internal birth control device such as an IUD 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

For additional information, please contact us at
ROSE@northwell.edu or (516) 562-ENDO (3636).

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 in the Northwell Health enterprise. Women not local to the area can still participate and complete study activities remotely, through e-mail and express mail. Click the links below to see: