RARE-X Data Collection Program

The Alström Syndrome community is partnering with RARE-X, a program of Global Genes to build a Data Collection Program for Alström families.

When you participate in the ASI Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.

The Alström Community is building the Alström Syndrome Data Collection Program to:

  • Inform researchers how Alström Syndrome changes over time.

  • Enable better data to use in clinical trials

  • Give patients 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

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

Attend our webinar for the ASI Data Collection Program on April 15th, 2026 at 5PM EST.

Sign Up Now!

ASI’s RARE-X Page

To join RARE-X and participate in ASI’s Data Collection Program come back soon! More info will be posted after our introductory webinar!

We are so excited to begin this journey for Alström Syndrome International and our families. For more information please visit the Global Genes sites below.