Data Collection Program

Introducing the 4H Leukodystrophy
Data Collection Program

The Yaya Foundation and 4H Leukodystrophy Community has launched a Data Collection Program, sometimes called a patient or disease registry, for families affected by 4H/POLR3-related Leukodystrophy.

You are invited and encouraged to participate in the 4H Leukodystrophy Data Collection Program to 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 

To participate in research and share your data, please visit the Data Collection portal:

To hear more about the importance of data collection and about our partner you are invited to watch our Info Session on this topic:

If you have any questions about the Data Collection Program, please reach out to or any of our Data Collection Ambassadors via the POLR3 Caretakers/4H Leukodystrophy Facebook page.