EDUCATION & TRAINING

Webinar – Paediatric to adult transition care for patients with Sickle Cell Disease: a global perspective

Sickle Cell Disease is a life-threatening inherited condition designated as a public health priority by WHO. Increased longevity of patients with Sickle Cell Disease in high-income, middle-income, and low-income countries present unprecedented challenges for all settings; however, a globally standardised solution for patient transition from paediatric to adult Sickle Cell Disease health care is unlikely to address the challenges.

A dedicated webinar was organised within ARISE on the 24th June 2020. A multi-country expert task force provided a global overview of transition from paediatric to adult health care practice in Sickle Cell Disease, highlighting barriers to effective transition care and provide baseline recommendations that can be adapted to local needs. For the webinar CPD points were awarded.

You can read the full article here.

The webinar material is available here below:

Webinar Agenda
Speakers' presentations
Webinar recording

You can consult or download the video recording of the webinar here.

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

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