EDUCATION & TRAINING

ASCAT 2020​

Also this year ARISE supported The Annual Scientific Conference on Sickle Cell and Thalassaemia – ASCAT 2020, that was held from 26th to 31st October in close collaboration with the European Heamatology Association(EHA) and the British Society of Haematology (BSH). Due to the COVID-19 pandemic an online virtual programme of events was held with a face to face element in the final days.

This year’s conference may in time turn out to provide a new and improved forum to come together to share best practice and develop strategies for the future. The theme is ‘Haemoglobinopathies: Emerging Challenges and Future Therapies’, that reflects the rapid progress in research for new drug therapies and curative therapies. A number of FDA approvals and other national approval process are at different stages.

Considering that the majority of patients with Sickle Cell Disease and Thalassemia live in low resource settings, these new therapies may not be readily accessible or affordable. Therefore, our attention needs to be refocused to improve newborn screening and comprehensive care, hydroxyurea therapy, blood transfusion and effective iron chelation.

Discover more about the conference programme here below:

Day 1, Day 2, Day 3, Day 4, Day 5, Day 6.

Here following the closing remarks from Professor Baba Inusa, founder of the ASCAT Conference.

Approximate model for online resource library for ARISE could be a hybrid of the CDC.gov webpages for sickle cell https://www.cdc.gov/ncbddd/sicklecell/index.html   and the website for HRSA HIV/AIDS Bureau https://hab.hrsa.gov/publications . This might serve as a Library or Toolkit for the education/training activities in Work Packages 2, 4, 5, 7 because some material is core information that is good for educating families, counseling, training CHEW, and even training clinicians.

  1. Content stored online, has keywords or clustered in webpages to allow search for topics and for audiences
    1. PDF text https://www.cdc.gov/ncbddd/sicklecell/materials/factsheets.html    https://www.cdc.gov/ncbddd/sicklecell/healthyliving.html   https://www.cdc.gov/ncbddd/sicklecell/traits.html
    2. Pictures and infographics
      1. https://www.cdc.gov/ncbddd/sicklecell/images/infographic-5-facts-1185px.jpg
      2. https://www.cdc.gov/ncbddd/sicklecell/documents/tipsheets_guide.pdf
    3. Videos? Podcasts?
      1.  https://hab.hrsa.gov/livinghistory/
      2. https://www.cdc.gov/ncbddd/sicklecell/materials/video.html
      3. https://www.cdc.gov/ncbddd/sicklecell/stories.html
    4. PowerPoint presentations
      1. https://targethiv.org/
      2. https://hab.hrsa.gov/about-ryan-white-hivaids-program/part-f-aids-education-and-training-centers-aetc-program
      3. https://sickleemergency.duke.edu/educational-resources/short-presentations-online-learning
      4. http://www.bioethicsinstitute.org/research/projects-2/hope/sickle-cell-disease-facilitators-guide
    5. Clinical guidelines and Model programs for specific clinical scenarios  – these can be presented in different ways but I really like the HIV/AIDS Bureau examples.
      1. https://hab.hrsa.gov/clinical-quality-management/clinical-care-guidelines-and-resources
      2. https://hab.hrsa.gov/about-ryan-white-hivaids-program/spns-workforce-building
      3. https://hab.hrsa.gov/about-ryan-white-hivaids-program/special-projects-national-significance-spns-program-initiative-products
      4. https://hab.hrsa.gov/sites/default/files/hab/Publications/careactionnewsletter/june2011.pdf
      5. https://hab.hrsa.gov/publications/library/2013-hiv-continuum-care-tennessee
      6. Clinician training video  https://sickleemergency.duke.edu/educational-resources/videos
  2. Download modules of materials