+

The GIGYF1 Research Foundation has partnered with RARE-X, a program of Global Genes, to build a Data Collection Program for GIGYF1 families. When you participate in the GIGYF1 related disorders data program, you’ll help accelerate research and the development of new drugs, devices and other therapies. The GIGYF1 Research Foundation Community is building the GIGYF1-Related Disorders Data Collection program to:

• Inform researchers of how GIGYF1 presents and changes over time

• Enable better data to inform clinical studies and research

• Give patients an opportunity to participate in clinical and research studies

• Reduce the time it takes to study new disorders

The GIGYF1-Related Disorders Data Collection Program will be patient-owned but enabled by the RARE-X technology platform. All data governance and security are provided by the RARE-X program and their robust governance strategies. GIGYF1-Related Disorders families will benefit from a streamlined process for collecting research-ready data in a phased approach.