CASK Data Collection Programme

The CASK community has partnered with non-profit RARE-X to build a CASK gene registry, or Data Collection Program, for CASK families. When you participate in the CASK Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.


CASK gene registry

The Data Collection Program will…

· Inform researchers how CASK symptoms change over time

· Enable better data to be used in clinical trials

· Give patients  with CASK gene mutations 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

This CASK gene registry (DCP) is patient-owned, secure, streamlined and international in scope. It is now part of Global Genes, the global advocacy non-profit for rare diseases.

Since RARE-X is a nonprofit, there is no cost to you or the CASK community

Our goal is to make the process as easy as possible for you. By clicking on the button below, you can learn more about this one-of-a-kind Data Collection Program and begin the first step in making your patient information available to researchers.

Xcelerate RARE

Data from the CASK community is being used in the Xcelerate RARE: A Rare Disease Open Science Data Challenge. Xcelerate RARE is bringing together researchers and data scientists in a collaborative and competitive environment to make the best use of CASK patient-provided data. Enroll in the CASK Data Collection Program today and not only Be Counted, but Be Seen!

Here is how you can participate:

● Make sure you are enrolled in the CASK Data Collection Program

● Check that all your surveys are complete, new neurodevelopmental surveys will be coming out in the next month. Data lock for Xcelerate RARE is February 28th

Upload your genetic report under the documents section in the DCP by February 28th.

Watch the launch of the CASK gene community registry (DCP)