The APDS patient registry is intended to advance the research and development of treatments, therapies and care for all those diagnosed with APDS.
APDS is currently thought to be a rare disease. Many specialist units will only look after a small number of patients – or perhaps only one – and if new treatments become available it could prove hard to spread information and knowledge rapidly to patients and doctors.
If potential new treatments are developed, this registry may be used to reach as many patients as possible to discuss participation in clinical studies.
We are in the process of conducting the consent, data protection and ethical review process necessary to begin recruitment to the APDS patient registry.
Please keep checking back!
The APDSyndrome team.