KdVS Data Collection Program with RARE-X


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.


Watch the KdVS and RARE-X introduction webinar:

Who is RARE-X?

  • RARE-X is a 501(c)(3) non-profit
  • RARE-X is collaborating with rare disease communities to more easily gather, structure and securely share critical data, through a common platform to accelerate diagnosis, disease understanding and development of future treatments and cures
  • RARE-X is building a platform for Collaboration NOT Competition
  • RARE-X believes that future successes in rare diseases will stem from collaborations between patients, researchers and biopharma partners.

Why participate?

By participating, you are…

  • Informing researchers how a disease or condition changes over time
  • Enabling better data to use in clinical trials
  • Reducing the time it takes to study new medicines in clinical tires
  • Speeding up the time to get therapeutics to patients
  • Enabling the use of data as a placebo (instead of actual patients) in a clinical trial

How it works

  • There is NO cost to patients or to KdVS Foundation
  • You control your data and who can see it
  • You participate by answering survey questions
  • You can save your data, continue at a later time and update in the future