PNH Registry

The PNH Registry is an international research database that collects anonymised data on patients with PNH worldwide.

It is non-interventional, which means that participation will not affect patients’ normal medical care. It is intended to gather information about the natural history and management of patients with PNH as well as capturing safety data on those receiving treatment for PNH.

Participation is voluntary. Patients with PNH are asked to participate in the registry to improve treatment for patients in the future.

As more therapies developed to treat PNH, a new registry was needed that would allow clinicians to continue to obtain information about the illness but also to capture safety data on these new treatments.

The International PNH Interest Group (IPIG) registry has now replaced the previous Alexion registry. IPIG is a non-for-profit organisation comprising PNH experts, nurses, patient advocates, and those involved in PNH research that are dedicated to enhance professional knowledge about PNH in order to improve patient care.

Whilst the IPIG registry is open in 7 countries so far with over 500 patients recruited, the UK is currently the biggest recruiting country for the registry. The registry aims to include at least 2000 patients worldwide with current plans to open in 20 countries.