Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases View Full Text


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Article Info

DATE

2012-08-10

AUTHORS

Caron Molster, Leanne Youngs, Emma Hammond, Hugh Dawkins

ABSTRACT

BACKGROUND: Calls have been made for governments to adopt a cohesive approach to rare diseases through the development of national plans. At present, Australia does not have a national plan for rare diseases. To progress such a plan an inaugural Australian Rare Diseases Symposium was held in Western Australia in April 2011. This paper describes the key issues identified by symposium attendees for the development of a national plan, compares these to the content of EUROPLAN and national plans elsewhere and discusses how the outcomes might be integrated for national planning. METHODS: The symposium was comprised of a series of plenary sessions followed by workshops. The topics covered were; 1) Development of national plans for rare diseases; 2) Patient empowerment; 3) Patient care, support and management; 4) Research and translation; 5) Networks, partnerships and collaboration. All stakeholders within the rare diseases community were invited to participate, including: people affected by rare diseases such as patients, carers, and families; clinicians and allied health practitioners; social and disability services; researchers; patient support groups; industry (e.g. pharmaceutical, biotechnology and medical device companies); regulators and policy-makers. RESULTS: All of these stakeholder groups were represented at the symposium. Workshop participants indicated the need for a national plan, a national peak body, a standard definition of 'rare diseases', education campaigns, lobbying of government, research infrastructure, streamlined whole-of-lifetime service provision, case co-ordination, early diagnosis, support for health professionals and dedicated funding. CONCLUSIONS: These findings are consistent with frameworks and initiatives being undertaken internationally (such as EUROPLAN), and with national plans in other countries. This implies that the development of an Australian national plan could plausibly draw on frameworks for plan development that have been proposed for use in other jurisdictions. The translation of the symposium outcomes to government policy (i.e. a national plan) requires the consideration of several factors such as the under-representation of some stakeholder groups (e.g. clinicians) and the current lack of evidence required to translate some of the symposium outcomes to policy options. The acquisition of evidence provides a necessary first step in a comprehensive planning approach. More... »

PAGES

50-50

References to SciGraph publications

  • 2010-10-19. French experience with rare diseases plans in ORPHANET JOURNAL OF RARE DISEASES
  • 2007-11-19. Networking for rare diseases: a necessity for Europe in BUNDESGESUNDHEITSBLATT - GESUNDHEITSFORSCHUNG - GESUNDHEITSSCHUTZ
  • 2006-03. Orphan Drug Designation and Pharmacogenomics in BIODRUGS
  • 2010-05-20. What are the current barriers to effective cancer care coordination? A qualitative study in BMC HEALTH SERVICES RESEARCH
  • 2010-08-20. Patient Registries: Utility, Validity and Inference in RARE DISEASES EPIDEMIOLOGY
  • 2010-08-20. Rare Diseases – Avoiding Misperceptions and Establishing Realities: The Need for Reliable Epidemiological Data in RARE DISEASES EPIDEMIOLOGY
  • 2010-08-20. National Plans and Strategies on Rare Diseases in Europe in RARE DISEASES EPIDEMIOLOGY
  • 2010-08-20. Creating a European Union Framework for Actions in the Field of Rare Diseases in RARE DISEASES EPIDEMIOLOGY
  • 2008-05. Developing a national collaborative study system for rare genetic diseases in GENETICS IN MEDICINE
  • 2007-01-11. The Use of the Internet in Data Assimilation in Rare Diseases in DIGESTIVE DISEASES AND SCIENCES
  • 2010-08-20. Rare Diseases Social Epidemiology: Analysis of Inequalities in RARE DISEASES EPIDEMIOLOGY
  • 2011-08-18. Awakening Australia to Rare Diseases: Symposium report and preliminary outcomes in ORPHANET JOURNAL OF RARE DISEASES
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    http://scigraph.springernature.com/pub.10.1186/1750-1172-7-50

    DOI

    http://dx.doi.org/10.1186/1750-1172-7-50

    DIMENSIONS

    https://app.dimensions.ai/details/publication/pub.1010626842

    PUBMED

    https://www.ncbi.nlm.nih.gov/pubmed/22883422


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