Patient Registry FAQ

WHAT DOES GENETIC ALLIANCE DO FOR FAMILIES?

We were so inspired by President and CEO of Genetic Alliance, Sharon Terry’s Ted Talk that we knew instantly that Genetic Alliance was the first step among many in allowing families to control and use personal health information to ensure direct benefit to our children.

WHAT IS PEER?

Currently, PEER is used by more than 45 organizations and communities who serve more than 60 conditions, and has over 15,000 individual participants. In 2015, PEER was also honored by the White House as one of nine leading platforms in the advancement of precision medicine.

WHY SHOULD I CONSIDER REGISTERING?

By placing control in the hands of the individual, PEER allows its participants to share data not only for specific purposes (for instance, a registry built to further research about a specific condition), but to potentially share data more broadly as well (for instance, with researchers who are working on other conditions or topics of interest, or even with clinical research networks like PCORnet).

WHAT IS SHARED?

If you don’t want your information available for all to see, simply say so. If you’d like to share your child’s data but without contact information, simply select that option for the platform. The only requirement for data access is that the individuals who contributed the data must have agreed to share! Transparency and access to data is beneficial to the public in accelerating translational and clinical research.

HOW IS DATA PROTECTED?

BioTrust engages in a number of important projects designed to transform the translational science space: Community Engaged Network for All (CENA), Patient Focused Drug Development (PFDD). Our work is overseen by the Genetic Alliance Ethics Team and the Institutional Review Board.

HOW DO I PARTICIPATE IN PEER?

PEER Platform is poised to launch in November of 2018. Please sign up for our newsletter for more information in the coming months.