The SCD Research Prioritisation Workshop at the Annual Scientific Conference on Sickle Cell and Thalassaemia, ASCAT 2019, has been a joint project of the ERN-EuroBloodNet together with ASCAT aiming to create a patient forum with at least 20 patients coming from EU countries that would gather before and during ASCAT to share experiences, build partnerships across countries and share good practice and ideas for patient support groups.
A "top 10" list has been presented by participants to the audience of medical practitioners of ASCAT, in the plenary session. This following list represents what people living with sickle cell disease would like the research community to focus on:
- How can we find a universally available cure for sickle cell disease?
- How can we improve quality of life for people living with sickle cell disease?
- What are the implications of sickle cell disease for work and education? How do we advise people, employers and schools?
- How do we manage acute pain to prevent hospitalisaton?
- How does staff diversity or lack of diversity affect the way patients experience racism, discrimination and stigma?
- How do we harness the political agendas to improve care for sickle cell disease?
- How can we optimize pregnancy for mother and baby in sickle cell disease?
- What complementary therapies work in sickle cell disease, including CBD oil and cannabis?
- How do we manage chronic pain?
- What is the impact of a comprehensive care team on outcomes for people living with sickle cell disease?
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