Thalassaemia Registries: A Call for Action. A Position Statement from the Thalassaemia International Federation.

Disease registries can be extremely powerful evidence generating tools while providing a central meeting point for all implicated stakeholders, facilitating their networking and interaction. Registries can play a major role in addressing the challenges that the care of thalassemia patients is currently facing. By collecting updated and representative data on disease burden, features, management and outcomes at local, national, regional and global level, thalassemia registries can allow the evaluation and bench marking of provided healthcare services, the detection of unmet clinical needs and the identification of inequalities in healthcare delivery. A total of 17 thalassemia registries has been in place since 1984, being characterized by heterogeneity and incomplete geographic coverage. Representativeness, interoperability, harmonization, quality assurance and sustainability are important features that thalassemia registries should pursue. The Thalassaemia International Federation (TIF) aims at promoting the coordination and collaboration in existing thalassemia registries and the establishment of new ones, with a particular focus on areas of emerging economies. In this regard, TIF has undertaken the design, development and implementation of a web-based platform to host a global thalassemia registry.

COVID-19 and thalassaemia: A position statement of the Thalassaemia International Federation.

OBJECTIVES: Many patients with haemoglobinopathies, including thalassaemia and sickle cell disease, are at increased risk of developing severe complications from the coronavirus disease 2019 (COVID-19). Although epidemiologic evidence concerning the novel coronavirus (SARS-CoV-2) infection in these patients is currently lacking, the COVID-19 pandemic represents a significant challenge for haemoglobinopathy patients, their families and their attending physicians. METHODS: The present statement summarizes the key challenges concerning the management of haemoglobinopathies, with particular focus on patients with either transfusion-dependent or non-transfusion-dependent thalassaemia, identifies the gaps in knowledge and suggests measures and strategies to deal with the pandemic, based on available evidence and expert opinions. Key areas covered include patients' risk level, adaptation of haemoglobinopathy care, safety of blood transfusions, blood supply challenges, and lifestyle and nutritional considerations. CONCLUSIONS: The proposed measures and strategies may be useful as a blueprint for other disorders which require regular hospital visits, as well as for the timely adaptation of patient care during similar future pandemics.