Authoritative tools and resources on Sickle Cell Disease available to all
Tools and resources for each of the concerned items are included in this section. They include ARISE outputs, as well as relevant material developed in the framework of other Sickle Cell Disease-related initiatives. Select a category to access resources.
Epidemiological studies to extimate the prevalence of SCD disease, predict future healthcare needs, map the existing healthcare provision and infrastructure.
Dormandy E. et al. How many people have sickle cell disease in the UK?
Kountouris P. et al. IthaGenes: An Interactive Database for Haemoglobin Variations and Epidemiology
Newborn Screening and Comprehensive care
Implementing a Newborn Sickle Cell Disease screening and comprehensive care programme is a key output for ARISE.
Laboratory diagnostics and quality assurance systems
Improve the quality and capacity of laboratory diagnostic testing services allows a timely diagnosis available to all patients. This allows to prevent complications.
Veil R. et al. Trajectories of Biological Values and Vital Parameters: An Observational Cohort Study of Adult Patients with Sickle Cell Disease Hospitalized for a Non-Complicated Vaso-Occlusive Crisis
Cherif-Alami S. et al. Serum Immunoglobulin Levels in Children with Sickle Cell Disease: A Large Prospective Study
Madhi F. et al. Identification of Clinical and Laboratory Parameters Associated with the Development of Acute Chest Syndrome during Vaso-Occlusive Episodes in Children with Sickle Cell Disease: A Preliminary Step before Assessing Specific and Early Treatment Strategies
Sickle Cell Disease complications (e.g. pain, chronic and organ damage)
Sickle Cell Disease might lead to severe complications such as pain and damages in organs, that might be fatal if not properly addressed.
Michele Arigliani et al. Differences in lung function between children with sickle cell anaemia from West Africa and Europe.
Community training and Implementation Science
Comprehensive training for all professionals and an engagement programme for community and families will be essential to establish the appropriate environment for population screening.
Hsu LL et al. Community Health Workers as Support for Sickle Cell Care
eHealth technologies are expected to accelerate the implementation, dissemination, and sustainability of the Newborn screening programme.
Genomics and genetics of Sickle Cell Disease
Improved knowledge in genetics and genomics of Sickle Cell Disease lead to improve the diagnosis, treatment, and prevention of sickle cell disease and other chronic illnesses.
Treatments for Sickle Cell Disease
Bone marrow transplantation is the only curative therapeutic approach for Sickle Cell Disease. Patients affected by Sickle Cell Disease can be treated with Hydroxyurea. However, the recent research progress can offer new therapeutic approaches.
Howard J. et al. Voxelotor in adolescents and adults with sickle cell disease (HOPE): long-term follow-up results of an international, randomised, double-blind, placebo-controlled, phase 3 trial – (discover more)
Ethics and Regulations
Ethical and regulatory issues to be considered to conduct research activities in the framework of the project.
Other Research Activities
Other topics on Sickle Cell Disease research.
Mainous A.G. III et al. Shared Care for Adults with Sickle Cell Disease:An Analysis of Care from Eight Health Systems
Grau M. et al. Impact of A Six Week Training Program on Ventilatory Efficiency, Red Blood Cell Rheological Parameters and Red Blood Cell Nitric Oxide Signaling in Young Sickle Cell Anemia Patients: A Pilot Study