NCT06213402Recruiting
RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
A Retrospective/Prospective, Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs) With Clinical Significance.
Source: ClinicalTrials.gov · Last updated 19 Jan 2024 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 32564 (estimated)
- First submitted
- 4 Dec 2023
- Start date
- 30 Nov 2021
- Primary completion date
- Dec 2024
- Lead sponsor
- Hospital Universitari Vall d'Hebron Research Institute
- Diseases
- Sickle cell disease, Thalassaemia
- NCT number
- NCT06213402
What you commit to
- Study type: Observational
- Planned participants: 32564
- From 30 Nov 2021 to the primary completion date, Dec 2024
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Patients diagnosed with SCD or THAL (alpha-thalassaemia and beta-thalassaemia) traits or trait conditions for other recessive RADs
Other
- Patient or legal representative for minors unwilling or unable to give consent
Who the study is looking for
- 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)
Age in the registry: 0 years to 100 years · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH) Coordinator of this site? Confirm its status | Barcelona | Spain | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.