RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)

Rare Anaemia Disorders (RADs) is a group of rare diseases characterized for presenting anaemia as the main clinical manifestation. Different medical entities classified as RADs by ORPHA classification are most of them chronic life threating disorders with many unmet needs for their proper clinical management creating an impact on European health systems. RADs present diagnostic challenges and their appropriate management requires from specialised multidisciplinary teams in Centers of expertise. Although there are some examples of well-established national registries on RADs in EU, the lack of recommendations for Rare disease registries implementation and the lack of standards for interoperability has led to the fragmentation or unavailability of data on prevalence, survival, main clinical manifestations or treatments in most of the European countries.

NCT Number	NCT06213402
Lead Sponsor	Hospital Universitari Vall d'Hebron Research Institute Collaborators: Erasme University Hospital, Cyprus Institute of Neurology and Genetics, EuroBloodNet Association
Conditions	Sickle Cell Disease, Thalassemia, Hemolytic; Anemia, Hereditary, Due to Enzyme Disorder, Anemia Due to Membrane Defect, CDA, Sideroblastic Anemia, Constitutional Aplastic Anemia, Iron Metabolism Disorders +1 more
Enrollment	32,564 participants
Start Date	2021-11-30
Primary Completion	2024-12 (estimated)
Study Completion	2036-11 (estimated)
Updated on ClinicalTrials.gov	2024-01-19