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H-abc disease research

H-ABC/Tubb4a Patient Data Collection

Patient Data Collection 

As scientists strive to better understand H-ABC/Tubb4a Leukodystrophy and develop effective therapies, collecting patient data is a critical part of accelerating their important work.

H-ABC and Tubb4a patient data collected on this website is held in a secure and centralised database managed by H-ABC Foundation UK. It records data on H-ABC/Tubb4a patients. Non-identifiable data is used to help support medical research.  

If you submit data below you have agreed for your data to be shared with relevant organisations that are working on treatment options for H-ABC/Tubb4a. H-ABC Foundation UK will share your information with Synaptix Bio who are working to bring a clinical trial to the H-ABC community, as well as other clinicians and organisations that could help develop future treatments for H-ABC/Tubb4a.

All data will be collected in line with GDPR guidelines. The information requested below is in respect of the H-ABC patient and if under 18 can be completed by their parent/guardian.

Thank you! Without patient support moving forward to treatment options would not be possible.


Patient Data Collection
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 thank you for your support!

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