(2013) (PC) organizations an international collaborative network of patients, [39] medical professionals, and scientists Schwartz United States PC Patient Members of the PC Project established the Not specified • (2013) organizations International PC Consortium, which connects [39] various researchers and specialists to conduct basic clinical research Dissemination of research-related information Ekins International Rare diseases in general Patients, The Open Drug Discovery Teams app collects The authors anticipate that this app will be • • (2012) (Note: project started in families, and Tweets using particular hashtags (e.g., used to disseminate information on new [144] North America) patient #sanfilipposyndrome) scientific developments, to network and organizations Anyone may use the app and curate the content discover other researchers, and to provide • by endorsing or disapproving of each Tweet (or opportunities for collaboration by highlighting conferences, publications, or laboratory data “factoid”) sharing JISC United Kingdom NMDs Patients Patients participated in the Talk Research focus Patients involved in the Talk Research focus • • (2011) group to discuss if the communication services group have become involved in other MDC [54] provided by the Muscular Dystrophy Charity activities such as reviewing grant applications (MDC), now known as Muscular Dystrophy UK, meet the needs of patients and to provide feedback on language, content, and the structure of the MDC websites and publications JISC United Kingdom NMDs Patient The MDC communication service employs a Not specified • (2011) organizations team of people who have work in research to [54] produce summaries of new research (e.g., lay summaries of clinical trials) The MDC is also part of Patient Inform, which • provides patients with access to research articles Landy Not specified Rare diseases in general Patient Patient organizations presented research at Not specified • (2012) organizations scientific conferences, via websites and [55] newsletters, and through the press Landy Not specified Rare diseases in general Patient Patient organizations helped to prepare research Not specified • (2012) organizations reports/articles [55] Provide funding for research Kelly International Cystic Fibrosis (CF) Patient CF patient organizations fund research, including Not specified • (2017) organizations funding one larger project, funding a series of [149] on a common theme, partially funding a research project, and indefinitely funding part of a
(2013) [39] (PC) organizations an international collaborative network of patients, medical professionals, and scientists Schwartz (2013) [39] United States PC Patient organizations • Members of the PC Project established the International PC Consortium, which connects various researchers and specialists to conduct basic clinical research Not specified Dissemination of research-related information Ekins (2012) [144] International (Note: project started in North America) Rare diseases in general Patients, families, and patient organizations • The Open Drug Discovery Teams app collects Tweets using particular hashtags (e.g., #sanfilipposyndrome) • Anyone may use the app and curate the content by endorsing or disapproving of each Tweet (or “factoid”) • The authors anticipate that this app will be used to disseminate information on new scientific developments, to network and discover other researchers, and to provide opportunities for collaboration by highlighting conferences, publications, or laboratory data sharing JISC (2011) [54] United Kingdom NMDs Patients • Patients participated in the Talk Research focus group to discuss if the communication services provided by the Muscular Dystrophy Charity (MDC), now known as Muscular Dystrophy UK, meet the needs of patients and to provide feedback on language, content, and the structure of the MDC websites and publications • Patients involved in the Talk Research focus group have become involved in other MDC activities such as reviewing grant applications JISC (2011) [54] United Kingdom NMDs Patient organizations • The MDC communication service employs a team of people who have work in research to produce summaries of new research (e.g., lay summaries of clinical trials) • The MDC is also part of Patient Inform, which provides patients with access to research articles Not specified Landy (2012) [55] Not specified Rare diseases in general Patient organizations • Patient organizations presented research at scientific conferences, via websites and newsletters, and through the press Not specified Landy (2012) [55] Not specified Rare diseases in general Patient organizations • Patient organizations helped to prepare research reports/articles Not specified Provide funding for research Kelly (2017) [149] International Cystic Fibrosis (CF) Patient organizations • CF patient organizations fund research, including funding one larger project, funding a series of on a common theme, partially funding a research project, and indefinitely funding part of a Not specified
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