EDUCATION & TRAINING

​TIFLIX: a comprehensive, reliable and engaging platform on Thalassaemia and Sickle Cell Disease

The TIFLIX (Thalassaemia International Federation LIbrary eXtended) platform is a video library powered by the Thalassaemia International Federation for healthcare professionals and patients with thalassaemia and sickle cell disease. It gathers a audio-visual educational contents on Thalassaemia and Sickle Cell Disease, presented by top-notch haematologists and other experts in the field. TIFLIX includes latest information, expert advice and educational resources on the diagnosis, management and complications of these diseases and new advances and therapies, clinical trials, blood safety and adequacy, challenges in care and much more.

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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