Data Collection Program

Introducing the 4H Leukodystrophy
Data Collection Program

The 4H/POLR3-related Leukodystrophy Community is partnering with RARE-X, a 501(c)3 nonprofit, to build a Data Collection Program, sometimes called a patient registry, for families affected by 4H/POLR3-related Leukodystrophy.

When you participate in the 4H Leukodystrophy Data Collection Program, you’ll help accelerate research and the development of new drugs and other therapies. This community is building the 4H Leukodystrophy Data Collection Program to … 

  • Inform researchers how 4H Leukodystrophy changes over time 
  • Enable better data to design and 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 

Our goal is to make the process as easy as possible for you. By attending our Info Session, 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. 

Attend our Info Session for the
4H Leukodystrophy Data Collection Program
June 16th at 3:00 pm ET / 2:00 pm CT / 12:00 pm PT