NCT06213402 RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
| NCT ID | NCT06213402 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Hospital Universitari Vall d'Hebron Research Institute |
| Condition | Sickle Cell Disease |
| Study Type | OBSERVATIONAL |
| Enrollment | 32,564 participants |
| Start Date | 2021-11-30 |
| Primary Completion | 2024-12 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 32,564 participants in total. It began in 2021-11-30 with a primary completion date of 2024-12.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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.
Eligibility 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
Contact & Investigator
María del Mar Manú Pereira, PhD
PRINCIPAL INVESTIGATOR
Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)
Frequently Asked Questions
Who can join the NCT06213402 clinical trial?
This trial is open to participants of all sexes, aged 0 Years or older, up to 100 Years, studying Sickle Cell Disease. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06213402 currently recruiting?
Yes, NCT06213402 is actively recruiting participants. Contact the research team at mar.manu@vhir.org for enrollment information.
Where is the NCT06213402 trial being conducted?
This trial is being conducted at Barcelona, Spain.
Who is sponsoring the NCT06213402 clinical trial?
NCT06213402 is sponsored by Hospital Universitari Vall d'Hebron Research Institute. The principal investigator is María del Mar Manú Pereira, PhD at Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH). The trial plans to enroll 32,564 participants.
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