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

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About this study

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.

Condition
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, Hereditary Anemia
Tested
Data collection from EHR.
Sponsor
Hospital Universitari Vall d'Hebron Research Institute

Who can join

Age
0 to 100 years
Sex
All sexes
Healthy volunteers
Not accepted

Inclusion 7

  • Minimum age: 0 years
  • Maximum age: 100 years
  • Study condition: 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, Hereditary Anemia
  • 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 2

  • 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

1 site, 1 recruiting

Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)

Barcelona, Catalonia, Spain

Recruiting

Contact

Potential match only. Final eligibility is determined by the study team.