H-abc disease research

H-ABC/Tubb4a Patient Data Collection

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Data Collection Launching March 2022!

As scientists strive to better understand H-ABC/TUBB4A Leukodystrophy and develop effective therapies, patient data is a critical part of accelerating their important work.

H-ABC/TUBB4A families are excited to participate in the data collection to expand and improve medical research. By coming to this site you can begin the fruit step in making your patient information available to researchers. By generating the most comprehensive H-ABC/TUBB4A Data Collection Program, we can accelerate research and development of new drugs, devices and other therapies. Only you hold the key to unlock future discoveries. 

As a family affected by H-ABC/TUBB4A-related Leukodystrophy, you are invited and encouraged to participate in the H-ABC/TUBB4A Data Collection Program supported  by the H-ABC Foundation UK and Foundation to Fight H-ABC. This program is in addition to CHOP's Natural History Study as the two go hand in hand.  

Your participation is needed to:

  • Inform researchers how H-ABC/TUBB4A-related 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

Join our webinar on the 18th March 2022 to learn more and how to sign up to the program. Zoom passcode below, 12pm ET US time/ 5pm UK time.

Join Zoom Meeting
https://us02web.zoom.us/j/88122313717?pwd=R010dFZPN3JKK0V5MjNyTDdqdGFHdz09

Meeting ID: 881 2231 3717
Passcode: 852120

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H-abc disease research

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