Koolen-de Vries Syndrome Foundation (KdVSF) is partnering with RARE-X to build a Data Collection Program (DCP) for the KdVS community. When you participate in the Koolen-de Vries Syndrome Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
The Koolen-de Vries Syndrome Data Collection Program will be patient-owned but enabled by RARE-X technology. All data governance, consent support, and data security will be put in place by RARE-X. Koolen-de Vries Syndrome families will benefit from a streamlined process for collecting research-ready data in a phased approach.