Actively Recruiting
RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
Led by Hospital Universitari Vall d'Hebron Research Institute · Updated on 2024-01-19
32564
Participants Needed
1
Research Sites
778 weeks
Total Duration
On this page
Sponsors
H
Hospital Universitari Vall d'Hebron Research Institute
Lead Sponsor
E
Erasme University Hospital
Collaborating Sponsor
AI-Summary
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.
CONDITIONS
Official Title
RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Age from 0 to 100 years, female and male
- Diagnosed with Rare Anaemia Disorders (RADs) including Sickle Cell Disease, Thalassemia, and others classified by ORPHANET
- Able and willing to provide written informed consent (patient or legal representative for minors)
You will not qualify if you...
- Unwilling or unable to provide consent (patient or legal representative for minors)
- Diagnosed only with sickle cell disease or thalassemia traits or trait conditions for other recessive RADs
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)
Barcelona, Catalonia, Spain, 08035
Actively Recruiting
Research Team
M
María del Mar Manú Pereira, PhD
CONTACT
V
Victoria Gutiérrez Valle, Msc
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
4
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