RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
Recruiting · NCT06213402 · Observational (researchers observe without assigning treatment) · Lead sponsor: Hospital Universitari Vall d'Hebron Research Institute
View the official record on ClinicalTrials.gov →Interventions studied
What this trial is about
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.
Who can take part
Inclusion criteria
- Patients must meet all of the following criteria to be included in the RADeep Registry
- Age from 0-100, both female and male
- Diagnosed as RADs (SCD, THAL, PKD, and other RADs THAL according to ORPHANET classification)
- Able and willing to provide written informed consent (patient or legal representative for minors)
Exclusion criteria
- Patient or legal representative for minors unwilling or unable to give consent
- Patients diagnosed with SCD or THAL (alpha-thalassaemia and beta-thalassaemia) traits or trait conditions for other recessive RADs
Where it is running
1 location listed.
- Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH) - Barcelona, Catalonia, Spain