European platform for collecting data on rare anemia disorders

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.