RareKidneyCancer.org’s mission is to facilitate communication about rare kidney cancers between patients, doctors and researchers. It does this by providing tools which shorten the distance between the user and the information s/he needs. But tools need data, and due to the low incidence of rare kidney cancers, trials are infrequent and there is limited data available for evidence-based treatment management. A such, when trials are run, patient data and trial results must be treated as a precious resource since these tools cannot work without clinical trial registration and results sharing. So we offer enthusiastic support to the AllTrials campaign and its work to endure that patients, providers and payers can access and understand clinical trial results and use them to inform their decisions about care.
