EDUCATION & TRAINING

NHS rolls out ‘life-changing’ treatment for thousands with sickle cell disease

Thousands of patients with sickle cell disorder are to be offered a new “life-changing” treatment on the NHS from today (3 May), following the approval and roll-out of a new drug that could significantly improve their quality of life.

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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