What is the Registry?

Roswell Park’s Familial Ovarian Cancer Registry is a collection of DNA samples, family history profiles and lifestyle information from patients and families with a history of ovarian cancer. Researchers use this collection to monitor patterns and trends in the disease; identify new genes associated with ovarian cancer; and develop new ways to detect, treat and prevent ovarian cancer.

Our registry, with information from nearly 3,000 families, is the largest such database in the world. In addition to our own research teams here at Roswell Park, we provide access to the Registry to top scientists from around the globe to support and expand critically needed study of ovarian cancer.

How the Registry works

We collect blood samples and family history profiles from patients and families affected by ovarian cancer (including cancer of the ovaries, omentum, fallopian tubes and peritoneum). Participants must be at least 18 years old and have a family history that includes any one of the following criteria:

  • Two or more cases of ovarian cancer
  • Three or more cases of cancer on the same side of the family, with at least one being is ovarian cancer
  • A family member with primary ovarian cancer and one more primary cancer type (such as ovarian and colon cancer, but not ovarian cancer that spread to the colon)
  • An ovarian cancer diagnosis at an early age (45 or younger) and one other cancer type

Please submit the Pre-Screening Form to help us determine whether you and your family should enroll in the registry. You must be at least 18 years old.

Because everyone’s medical and family history is different, your answers will allow us to review your particular case and family background. If you are deemed eligible to participate, you’ll receive a packet of information including consent forms and family history questionnaire. From there, we will work with you and your doctors to obtain a blood sample.

Join the Registry

By joining the registry, you play an important role in helping advance ovarian cancer research. The process is easy, and we arrange everything you will need. Here’s how to start:

  1. Submit the Pre-Screening Form. If your personal or family history indicates a likelihood of familial ovarian cancer, we will contact you to explain the process, answer questions and get your consent.
  2. Complete a Family History Questionnaire.
  3. Give a blood sample. We will provide you with a blood kit that may be taken to your doctor's office or clinical laboratory for a blood draw. They will return the blood sample to us in our self-addressed pre-paid Federal Express packaging. There will be no expense incurred by you for providing a blood sample. If your physician charges for this procedure the Registry will reimburse you.

What You Should Know

  • Your participation is 100% confidential. We follow all federal health guidelines as well as all national and international scientific research privacy protocols.
  • It’s free. You will not incur any costs to join the registry. The registry — and the research it supports — is funded 100% by charitable donations to the Roswell Park Alliance Foundation.
  • Your impact is priceless. Your single blood sample donation and the information you provide will have a positive impact on ovarian cancer research leading to promising advances.

Partner with Us

Our ongoing research of familial ovarian cancer depends upon continued collaboration with research and medical institutions across the country that share our mission. As an affiliate, you can help:

  • Increase awareness of our mission and program
  • Encourage your center’s patients and their families to participate in the registry

We are grateful to work with the following medical and research organizations:

  • Ovarian Cancer Association Consortium (OCAC)
  • Consortium of Investigators of Modifiers of BRCA1/2 (CIMBA)