Data Collection Program
As scientists strive to better understand 4H Leukodystrophy and develop effective therapies, patient data is a critical part of accelerating their important work.
As a family affected by 4H/POLR3-related Leukodystrophy, you are invited and encouraged to participate in the Yaya Foundation and 4H Leukodystrophy Community’s Data Collection Program.
As a family affected by 4H/POLR3-related Leukodystrophy, you are invited and encouraged to participate in the Yaya Foundation and 4H Leukodystrophy Community’s Data Collection Program.
Your participation is needed 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