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Spanish registry of hemoglobinopathies and rare anemias (REHem-AR): demographics, complications, and management of patients with β-thalassemia.

Eduardo J Bardón-CanchoJosé Manuel Marco-SánchezDavid Benéitez-PastorSalvador Payán-PerníaAnna Ruiz LlobetRubén BerruecoMarina García-MorinCristina BeléndezLeonor SenentMaría José Ortega AcostaIrene Peláez PleguezuelosPablo VelascoAnna ColladoMarta Moreno-CarbonellBienvenida ArgilésInmaculada Pérez de SotoMaría Del Mar BermúdezEduardo J Salido FiérrezAdoración Blanco-ÁlvarezPablo González NavarroElena Cela
Published in: Annals of hematology (2024)
Our registry enabled us to describe the management of β thalassemia in Spain and to analyze the morbidity and mortality of the cohorts of patients with TDT and NTDT. Complications related to iron overload in TDT and NTDT account for most of the morbidity and mortality of the disease, which is associated with a considerable social, psychological, and economic impact, although cardiac, osteopathy and endocrinological complications requiring more attention. The convenience and simplicity of online registries make it possible to homogenize variables and periodically update data, thus providing valuable information on these diseases.
Keyphrases
  • risk factors
  • health information
  • healthcare
  • left ventricular
  • mental health
  • sickle cell disease
  • social media
  • heart failure
  • big data
  • machine learning
  • depressive symptoms