%0 Journal Article
%T An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry
%A Christoph Gasteyger
%A Christoph Licht
%A Gema Ariceta
%A Johan Vande Walle
%A Joran Beck
%A Len Woodward
%A Sally Johnson
%A on behalf of the aHUS Registry SAB
%J Archive of "Orphanet Journal of Rare Diseases".
%D 2016
%R 10.1186/s13023-016-0537-5
%X Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease¡¯s natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS), the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov {"type":"clinical-trial","attrs":{"text":"NCT01522183","term_id":"NCT01522183"}}NCT01522183)
%K aHUS
%K Patient advocacy
%K Patient engagement
%K Registry
%U https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117495/