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European Rare Blood Disorders Platform (ENROL)

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About this study

ENROL, the European Rare Blood Disorders Platform has been conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on Rare Hematological Diseases (RHDs). ENROL aims at avoiding fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform. ENROL's principle is to maximize public benefit from data on RHDs opened up through the platform with the only restriction needed to guarantee patient rights and confidentiality, in agreement with EU regulations for cross-border sharing of personal data. Accordingly, ENROL will map the EU-level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations, and treatments in order to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To this aim, ENROL will connect and facilitate the upgrading of existing RHD registries, while promoting the building of new ones when / where lacking. Target-driven actions will be carried out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries, including different cultural and linguistic strategies. The standardized collection and monitoring of disease-specific healthcare outcomes through the ENROL user-friendly platform will determine how specialized care is delivered, where are the gaps in diagnosis, care, or treatment and where best to allocate financial, technical, or human resources. Moreover, it will allow for promoting research, especially for those issues that remain unanswered or sub-optimally addressed by the scientific community; furthermore, it will allow promoting clinical trials for new drugs. ENROL will enable the generation of evidence for better healthcare for RHD patients in the EU as the ultimate goal. ENROL officially started on 1st June 2020 with a duration of 36 months. ENROL is co-funded by the Health Programme of the European Union under the call for proposals HP-PJ-2019 on Rare disease registries for the European Reference Networks. GA number 947670

Condition
Anemia, Bone Marrow Failure, Bleeding Disorder, Iron Metabolism Disorders, Myeloma, Lymphoid Neoplasm, Myeloma, Malignant, Leukemia, Anemia, Sickle Cell, Thalassemia, Blood Cancer, Red Cell Membrane and Enzyme Abnormalities
Tested
Collection of clinical and laboratory data from EHR.
Sponsor
Hospital Universitari Vall d'Hebron Research Institute

Who can join

Age
Up to 100 years
Sex
All sexes
Healthy volunteers
Not stated

Inclusion 6

  • Maximum age: 100 years
  • Study condition: Anemia, Bone Marrow Failure, Bleeding Disorder, Iron Metabolism Disorders, Myeloma, Lymphoid Neoplasm, Myeloma, Malignant, Leukemia, Anemia, Sickle Cell, Thalassemia, Blood Cancer, Red Cell Membrane and Enzyme Abnormalities
  • 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 1

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

Where

1 site, 1 recruiting

María del Mar

Barcelona, Catalonia, Spain

Recruiting

Contact

Potential match only. Final eligibility is determined by the study team.