Rare Anaemias Disorders European Epidemiological Platform (RADeep)

Rare Anaemias Disorders European Epidemiological Platform (RADeep)

2018-01-15
Rare Anaemias Disorders European Epidemiological Platform (RADeep)

The umbrella for both new and already existing European patients’ registries in rare anaemias

The Rare Anaemias Disorders European Epidemiological Platform (RADeep) is currently being implemented as a joint venture conceived in the core of ERN-EuroBloodNet to become an umbrella for both new and already existing European patients’ registries in rare anaemias (RAs). RADeep is being implemented in different phases through disease specific arms, thus, there are a number of actions that need to be done as transversal issues for their implementation. These tasks are done by the core team of RADeep:

  • Béatrice Gulbis – RADeep Director
  • Maria del Mar Mañú – RADeep Platform coordinator 
  • Marina Kleanthous and Petros Kountouris – RADeep Platform developers
  • Victoria Gutierrez Valle – RADeep Platform manager 
  • Raffaella Colombatti – RADeep Platform protocol for gathering of data 
  • Paola Bianchi – RADeep Platform protocol for gathering of data

 

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. RADeep phases of implementation (foreseen) are:


  • PKDeep – 1st phase of implementation on pyruvate kinase deficiency 
  • Sickle Cell Disease - Thalassaemia - Congenitaldyserythropoieticanaemias (CDA)
  • Hereditary erythropoietic failure or aplasia: Diamond Blackfan anaemia (DBA) and Fanconi Anaemia (FA) 
  • Membrane disorders and other enzymopathies 
  • Hereditary sideroblastic anaemias
  • Hereditary non-sideroblastic anaemias due to iron defects

In this context, we are very happy to anounce the launch of RADeep website! We invite you to visit and learn more about the platform at: www.eurobloodnet.eu/radeep

 

Euro Blood Net