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'High hopes for treatment': Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases.

Christina Q NguyenDidu S T KariyawasamTsz Shun Jason NgaiJames NguyenKristine ConcepcionSarah E GrattanEmma Elizabeth PalmerKate HetheringtonClaire E WakefieldRussell C DaleSusan R WoolfendenShekeeb S MohammadMichelle Anne Farrar
Published in: Health expectations : an international journal of public participation in health care and health policy (2024)
Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.
Keyphrases
  • healthcare
  • young adults
  • palliative care
  • mental health
  • resting state
  • cerebral ischemia
  • pain management
  • global health
  • affordable care act