MedTrace Logo

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

NCT06213402 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 32564

Last updated 2024-01-19

No results posted yet for this study

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 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.

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
  • Hereditary Anemia

Interventions

OTHER

Data collection from EHR.

Collection of clinical and laboratory data. Reviwe of the electronic health record

Sponsors & Collaborators

  • Erasme University Hospital

    collaborator OTHER

  • Cyprus Institute of Neurology and Genetics

    collaborator OTHER

  • EuroBloodNet Association

    collaborator OTHER

  • Hospital Universitari Vall d'Hebron Research Institute

    lead OTHER

Principal Investigators

  • María del Mar Manú Pereira, PhD · Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)

  • Béatrice Gulbis, MD · Hôpital ERASME (ERASME)

  • Petros Kountouris, PhD · Cyprus Institute of Neurology and Genetics (CING)

Eligibility

Min Age
0 Years
Max Age
100 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2021-11-30
Primary Completion
2024-12-31
Completion
2036-11-30

Countries

  • Spain

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06213402 on ClinicalTrials.gov