Condition: Sickle Cell Disease · Thalassemia · Hemolytic; Anemia, Hereditary, Due to Enzyme Disorder · Sponsor: Hospital Universitari Vall d'Hebron Research Institute
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.
This description comes directly from the study's public registry record.
María del Mar Manú Pereira, PhD · 0034934893000 · mar.manu@vhir.org
Victoria Gutiérrez Valle, Msc · 0034934893000 · victoria.gutierrez@vhir.org
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| Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH) | Barcelona, Catalonia, Spain | Recruiting |
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Source record: clinicaltrials.gov/study/NCT06213402