Wednesday, 24 January 2018 19:34

Rare Anaemias Disorders European Epidemiological Platform (RADeep)

radeep

The Rare Anaemia Disorders European Epidemiological Platform (RADeep) is an integrated platform connecting databases and patient registries for rare hematological conditions across Europe. It was conceived and put under development by EuroBloodNet, the European Reference Network (ERN) on Rare Hematological Diseases, to foster European cooperation for epidemiological surveillance, improve access to specialized and adequate health care, and facilitate research and development of new treatments, thus increasing the knowledge and promoting best practices for these rare diseases at the EU level.

RADeep is being implemented in different phases through disease-specific arms. For each disease-specific arm, a scientific committee will be established including experts on the prevention, diagnosis and clinical care of the disease, researchers, and national coordinators for data gathering.

The disease-specific arms of RADeep include:

  1. PKDeep (1st phase of implementation on pyruvate kinase deficiency),
  2. Sickle cell disease,
  3. Thalassaemia,
  4. Congenitaldyserythropoieticanaemias (CDA),
  5. Hereditary erythropoietic failure or aplasia: Diamond Blackfan anaemia (DBA) and Fanconi Anaemia (FA),
  6. Membrane disorders and other enzymopathies,
  7. Hereditary sideroblastic anaemias, and
  8. Hereditary non-sideroblastic anaemias due to iron defects.

 

More information: RADeep Official Site

 

Future events

  • RE(ACT) Congress
  • Human Genome Meeting 2018
  • NGS 2018
  • ESH - GR-EX 2nd International Symposium on Red Blood Cells: Genesis and Pathophysiology
  • PGDIS 2018 - 17th International Conference on Preimplantaion Genetics

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