CYFIP2 Data Collection Program

CYFIP2 Network is partnering with RARE-X, a program of Global Genes, to build a Data
Collection Program for CYFIP2 families. When you participate in the CYFIP2 Data
Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.

We are building the CYFIP2 Data Collection Program to:
· Inform researchers how CYFIP2 conditions change over time
· Enable better data to use in clinical trials
· Give patients the opportunity to participate in clinical trials
· Reduce the time it takes to study new medicines
· Speed up the time to get treatments to patients
· Enable the use of data as a placebo (instead of actual patients) in a clinical trial

The CYFIP2 Data Collection Program will be patient-owned but enabled by the RARE-X technology
platform. All data governance, consent, support, and data security will be put in place by RARE-X Program. CYFIP2 families will benefit from a streamlined process for collecting research-ready data in a phased
approach.

Sign up for our launch webinar with RARE-X on November 15th at 2pm EST on Zoom!