Helping women touched by cancer become mothers.
Oncofertility, FIRST Registry and You.

Cancer and Fertility Long-Term Research Study.

An interview with: Kate Waimey Timmerman, PhD, Program Director, Oncofertility Consortium, Northwestern University

What is FIRST Registry?  

The FIRST registry is the first long-term study to examine the effects of cancer treatment on fertility and reproductive health in female cancer survivors. When newly diagnosed cancer patients discuss fertility with their providers, they often ask for precise and accurate rates of fertility outcomes after specific cancer treatments but this data is currently lacking. For example, the exact rates of infertility or subfertility are not known in young cancer survivors. This information is needed to understand the scope of the infertility problem after cancer and better guide patients.

 Who can take part?

 Any woman aged 18-44 who has received a cancer diagnosis in the past three years. Joining the FIRST project is a unique chance to be part of a global effort to collect information on fertility and other women’s health issues in young female cancer survivors. Interested women can participate by contacting the FERTline at 866/708-FERT (3378) or ayastudy@ucsd.edu.

Why should people sign up?

Participating in the registry is an opportunity for cancer survivors to give back to the community. Data from this study will be used to improve clinical care and guide the next generation of cancer patients when contemplating their reproductive future. Women in the registry will also be able to participate in future opportunities to answer reproduction-related questions in cancer survivors.

Where and when is it?

The FIRST registry is a nationwide online survey that was launched this summer by Oncofertility Consortium researchers based at the University of California, San Diego. Collaborators at the University of Southern California, University of Washington, University of Alabama, University of North Carolina, University of Pennsylvania, and Northwestern University are also participating in this research project.

During this first year, researchers hope to enroll 500 women in the registry. Participating women will be asked to complete an online questionnaire yearly about menstrual periods, pregnancy, and hormonal health, to assess a variety of women’s health outcomes. This information will help researchers learn the scope of reproductive problems after cancer with just a few minutes of effort each year. 

What does the Oncofertility Consortium hope to get from FIRST registry?

 Results of the FIRST study will be used to guide health care providers as they communicate fertility preservation options for cancer patients and contraceptive needs for survivors. Having more accurate data on the fertility risks of specific radiation treatments, chemotherapeutics, and surgeries will also help guide patients during the fertility preservation decision-making process.

What other programs does the Oncofertility Consortium offer?

 The Oncofertility Consortium is a group of researchers and clinicians dedicated to exploring and expanding options for the reproductive future of cancer survivors. We also communicate our research findings through our blog (blog.oncofertility.northwestern.edu), MyOncofertility.org, and the iSaveFertility iPhone App. We are also working with Fertile Action to further inform the health care and cancer survivorship communities through upcoming educational programs. Stay tuned for more information!