Actively Recruiting
European Rare Blood Disorders Platform (ENROL)
Led by Hospital Universitari Vall d'Hebron Research Institute · Updated on 2024-02-09
37090
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
H
Hospital Universitari Vall d'Hebron Research Institute
Lead Sponsor
E
ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are developing the European Rare Blood Disorders Platform (ENROL) to unify and improve data collection on Rare Hematological Diseases (RHDs) across Europe. This platform aims to reduce fragmentation by connecting new and existing patient registries, promoting data sharing standards, and protecting patient confidentiality. ENROL focuses on mapping demographics, diagnosis methods, genetic data, clinical features, and treatments to support research and healthcare planning for over 450 different rare blood disorders, including inherited and acquired conditions such as anemia, bone marrow failures, bleeding disorders, and blood cancers. The platform integrates retrospective and prospective patient data from healthcare providers and existing national or local registries. Data are collected at the time of inclusion and updated annually to monitor disease trends and support research. ENROL supports varying levels of data detail, from aggregated counts for epidemiological surveillance to pseudonymized individual patient data for research and clinical trial identification. Patients are grouped by specific rare blood disorder categories such as inherited anemia, acquired bone marrow failure, bleeding disorders, iron metabolism disorders, myeloid malignancies, and lymphoid malignancies. Participants include males and females aged 0 to 100 years diagnosed with RHDs per ORPHANET classification. Data collection includes clinical and laboratory information from electronic health records and other registries. The study monitors demographic and epidemiological outcomes over 15 years, with ongoing data pooling and analysis to improve understanding and care of rare blood disorders. Participation involves providing informed consent and allowing data sharing under strict privacy and data protection regulations, with no expected end date for the platform’s operation and data collection.
CONDITIONS
Brief Title
European Rare Blood Disorders Platform (ENROL)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients aged from 0 to 100 years, both female and male
- Diagnosed with rare hematological diseases according to ORPHANET classification
- Able and willing to provide written informed consent (patient or legal representative for minors) if required by national laws
You will not qualify if you...
- Diagnosed only as traits or trait conditions for other recessive rare hematological diseases
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 15 years
Participants' clinical and laboratory data are collected retrospectively and prospectively to monitor rare hematological diseases over time.
Data collection at inclusion and at 12-month intervals
Trial Site Locations
Total: 1 location
1
María del Mar
Barcelona, Catalonia, Spain, 08035
Actively Recruiting
Research Team
M
María del Mar Manú Pereira, PhD
V
Victoria Gutiérrez Valle, Biotech
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
6
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