Status:
RECRUITING
RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
Lead Sponsor:
Hospital Universitari Vall d'Hebron Research Institute
Collaborating Sponsors:
Erasme University Hospital
Cyprus Institute of Neurology and Genetics
Conditions:
Sickle Cell Disease
Thalassemia
Eligibility:
All Genders
Up to 100 years
Brief Summary
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...
Detailed Description
The Rare Anaemia Disorders European Epidemiological Platform (RADeep) is an initiative endorsed by the European Reference Network on Rare Hematological Diseases (ERN-EuroBloodNet) under the frame of t...
Eligibility Criteria
Inclusion
- 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
- 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
Key Trial Info
Start Date :
November 30 2021
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
November 1 2036
Estimated Enrollment :
32564 Patients enrolled
Trial Details
Trial ID
NCT06213402
Start Date
November 30 2021
End Date
November 1 2036
Last Update
January 19 2024
Active Locations (1)
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1
Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)
Barcelona, Catalonia, Spain, 08035