Platform for Rare Blood Disorders in Europe

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 European Rare Blood Disorders Platform (ENROL) aims to consolidate data from various registries on Rare Hematological Diseases (RHDs) to enhance research and epidemiological surveillance. By promoting interoperability standards for patient registries, ENROL will map demographics, survival rates, diagnosis methods, genetic information, clinical manifestations, and treatments across Europe. This observational study will facilitate the identification of patient cohorts for collaborative research projects while ensuring compliance with EU data protection regulations. The platform seeks to maximize public benefit from RHD data while safeguarding patient rights and confidentiality.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patients must meet all of the following criteria to be included in the ENROL Registry
* Age from 0-100, both female and male
* Diagnosed as RHDs according to ORPHANET classification
* Able and willing to provide written informed consent (patient or legal representative for minors) if needed according to national legislation.

Exclusion Criteria:

* Patients diagnosed as traits or trait conditions for other recessive RHDs

Where it's running

• María del Mar
  Barcelona, Catalonia, Spain Recruiting

Study contacts

• Principal investigator: María del Mar Manú Pereira, PhD — Vall d'Hebron Institut de Recerca / University Hospital Vall d'Hebron (VHIR / HUVH)
• Study coordinator: María del Mar Manú Pereira, PhD
• Email: mar.manu@vhir.org
• Phone: +34934893000

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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.