European platform for collecting data on rare anemia disorders
A Retrospective/Prospective, Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs) With Clinical Significance.
This study is trying to gather important information from people with rare anemia disorders across Europe to help improve their treatment and care.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 32564 (estimated) |
| Ages | 0 Years to 100 Years |
| Sex | All |
| Sponsor | Hospital Universitari Vall d'Hebron Research Institute Academic / other |
| Locations | 1 site (Barcelona, Catalonia) |
| Trial ID | NCT06213402 on ClinicalTrials.gov |
What this trial studies
The RADeep initiative aims to create a comprehensive epidemiological platform for patients diagnosed with rare anemia disorders (RADs) across Europe. It focuses on the standardized collection of demographic, disease-management, and treatment outcome data to address the challenges faced by patients with RADs. By sharing pseudonymized data, the platform seeks to enhance research and improve clinical practices related to these rare conditions. The initiative is supported by the European Reference Network on Rare Hematological Diseases and aims to promote best practices in prevention, diagnosis, and treatment.
Who should consider this trial
Good fit: Ideal candidates for this initiative are patients of any age diagnosed with rare anemia disorders such as sickle cell disease or thalassemia.
Not a fit: Patients diagnosed with trait conditions of sickle cell disease or thalassemia may not benefit from this study.
Why it matters
Potential benefit: If successful, this platform could significantly improve the understanding and management of rare anemia disorders, leading to better patient outcomes.
How similar studies have performed: Other studies have shown success in establishing national registries for rare diseases, but this approach aims to create a novel, standardized European platform.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 Criteria: * 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 this trial is running
Barcelona, Catalonia
- Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH) — Barcelona, Catalonia, Spain (Recruiting)
Study contacts
- Principal investigator: María del Mar Manú Pereira, PhD — Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)
- Study coordinator: María del Mar Manú Pereira, PhD
- Email: mar.manu@vhir.org
- Phone: 0034934893000
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.