CYFIP2 Data Collection Program

CYFIP2 Network has partnered 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.

The CYFIP2 Data Collection Program:
· Informs researchers how CYFIP2 conditions change over time
· Enables better data to use in clinical trials
· Gives patients the opportunity to participate in clinical trials
· Reduces the time it takes to study new medicines
· Speeds up the time to get treatments to patients
· Enables the use of data as a placebo (instead of actual patients) in a clinical trial

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