Patient Registries are important for those with rare diseases. aHUS is served by several Registries.
None are perfect either because of their scope, coverage, data quality/ insufficiency, incompatibility or lack of effective use. Nevertheless their data is valuable for ultimately improving health outcomes of aHUS patients.
Some may be global, such the aHUS Registry, since 2012, and the HUS/TTP Registry, since 1996.
Others may be continental such as ERKNet’s ERKReg in Europe. aHUS patients are likely to be a small part of its TMA Cohort which currently stands at 134 and which is a small part of the total 2039 patients registered to date (in less than two years).
Some may be at National level, such as ,among other examples , RaDaR in the U.K. RaDaR or the National Registry for Rare Kidney Diseases is a part of a Renal Association’s Rare Renal initiative to improve the lives of kidney patients living with rare diseases.
Its scope is all rare kidney diseases in the U.K. It has existed for over 10 years. Yet few know about it.
Recruitment to RaDaR, like in Global and Continental Registries, is limited to those hospitals choosing ,and being approved, to participate. Currently there are nearly 24000 patients with rare renal diseases enrolled, in 111 hospitals throughout the U.K. Of these patients 243 have an aHUS diagnosis.
Very little is known about the aHUS cohort in RaDaR, nothing has so far been published in the public domain except the spread of patients recruited over participating hospitals. The male/ female, adult /children and average ages of surviving patients and their genetics is unknown. It remains there to be used.
A patient re-consenting programme is underway to improve the ability of researchers to use the clinical and other data that patients are providing.
Nevertheless aHUS patients are benefiting from enrollment because of a feature known as ‘My Patient View’. This enables patients to access their records to examine their recent blood tests at clinics online. Patients can also feedback their comments about their current health.
There are links to patient information about aHUS, as well as initial diagnosis and management advice to clinicians.
More information about Rare Renal and RaDaR can be found on its website click here. It is one of the best Registry websites on the web.