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Table 3 Research-related activities undertaken by RDPOs in the last five years

From: The involvement of patient organisations in rare disease research: a mixed methods study in Australia

Activity Number of RDPOs (percent of 61 survey respondents)a
Provided funding to researchers, research bodies or a specific research fund/foundation separate to the RDPO 36 (59.0)
Collaborated with or provided non-financial support to researchers or research bodies 47 (77.0)
Established or maintained the organisation’s own patient registry (i.e. a data set containing clinical information about patients) or biobank (collection of biological samples) 7 (11.5)
Contributed to an external patient registry, data set, or biobank 25 (41.0)
Advocated to government or other authorities for research funding, other research resources, or changes in regulations relating to research 22 (36.1)
Participated in a committee within a government or research body responsible for research decision-making 12 (19.7)
Provided information or counselling to assist participants in research studies 21 (34.4)
Disseminated information about research (for example, by making information about research findings available on your website) 48 (78.7)
Conducted the organisation’s own research 16 (26.2)
None of the above 3 (4.9)
  1. aTotals equal more than 100 % because respondents could choose more than answer