Exploring the Fertility Preservation Needs of Individuals with Positive Genetic Test Results

Surveys, Registries, Interviews
Survey and video interview for people who tested positive for an inherited mutation

Study Coordinator: Adrienne Chase, Master’s in Genetic Counseling Student, University of Maryland School of Medicine
[email protected]

Director: Shannan Dixon, MS, CGC, Master’s in Genetic Counseling Training Program, University of Maryland School of Medicine
[email protected]

About the Study

The goal of this study is to identify if there is a need for more specialized providers, specifically genetic counselors, to meet the needs of patients regarding fertility preservation and family planning prior to cancer treatment or preventative surgery. We hope to identify the appropriate setting and timeline for these services to streamline and enhance comprehensive patient care for patients with a hereditary breast or gynecologic cancer variant.

What the Study Involves

Participation begins with a short survey to confirm that you are eligible for the study. If you are eligible, you will be contacted with a survey to answer demographic questions and schedule a Zoom interview that will last no longer than one hour. You will be asked about experiences and perceptions surrounding fertility preservation options and discussions. You will be asked to share your opinion on how providers can best meet the needs of patients to help them make informed family planning decisions. Participants will receive a $20 electronic gift card, which will be sent by email within 4-6 weeks after the interview.

Click here to participate: https://bit.ly/3BY8wHW

This Study is Open To:

You may be able to participate if they:

have previously had genetic testing.
have received a positive result for a variant associated with hereditary breast and gynecologic cancer in one of the following genes:
- ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, DICER1, EPCAM, MLH1, MSH2, MSH6, NF1, PALB2, PMS2, PTEN, RAD51C, SMARCA4, STK11, TP53
were between the ages of 18 and 45 at the time of testing results/diagnosis.

This Study is Not Open To:

About FORCE

FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.