Patient Not specified Rare diseases in general Patient Patient organizations assist in the development of Not specified • Partner organizations clinical research protocols [20] Patient Not specified Rare diseases in general Patient Patient organizations review funding requests, Not specified • Partner organizations clinical trial protocols, or patient information to be [20] used in a trial Patient Not specified Rare diseases in general Patient Patient organizations provide advice or serve as Not specified • Partner organizations advisory members on clinical research program [20] committees for the development of a trial Patient Not specified Rare diseases in general Patient Patient organizations supply demographic and Not specified • Partner organizations disease-specific information on members [20] represented by the organization for use in a trial Provide funding for clinical trials Fajac Europe CF Patient The European Cystic Fibrosis Clinical Not specified • Society’s (2013) organizations Trial Network (ECFS-CTN) is funded by the [150] ECFS and national patient organizations through the umbrella organization CF Europe Groft United States Rare diseases in general Patient Patient organizations fund research conducted Researchers in the RDCRN ranked direct • • (2013) organizations within the RDCRN, including travel clinics to funding as one of the top three benefits of [23] facilitate patient access to investigators and studies interactions with patient organizations [154] within the RDCRN Patient Not specified Rare diseases in general Patient Patient organizations finance or raise funds for Not specified • Partner organizations clinical trials [20] Development of or involvement in clinical trial organizations/networks Fajac Europe CF Patient The ECFS established a clinical trial network Not specified • (2013) organizations (ECFS-CTN) comprised of 30 selected sites across [150] 11 European countries Current initiatives are to set up an • trial, to implement central laboratories for outcome measures, further develop new surrogate end points, and establish a quality-improvement program Fajac Europe CF Patient A patient organization representative sits on the Not specified • (2013) organizations Executive Committee of the ECFS-CTN and other [150] representatives are invited to meet with the Executive Committee once a year Fajac Europe CF Patient Patient organizations are invited to ECFS-CTN Not specified • (2013) organizations steering committee meetings twice a year
Patient Partner [20] Not specified Rare diseases in general Patient organizations • Patient organizations assist in the development of clinical research protocols Not specified Patient Partner [20] Not specified Rare diseases in general Patient organizations • Patient organizations review funding requests, clinical trial protocols, or patient information to be used in a trial Not specified Patient Partner [20] Not specified Rare diseases in general Patient organizations • Patient organizations provide advice or serve as advisory members on clinical research program committees for the development of a trial Not specified Patient Partner [20] Not specified Rare diseases in general Patient organizations • Patient organizations supply demographic and disease-specific information on members represented by the organization for use in a trial Not specified Provide funding for clinical trials Fajac (2013) [150] Europe CF Patient organizations • The European Cystic Fibrosis Society’s Clinical Trial Network (ECFS-CTN) is funded by the ECFS and national patient organizations through the umbrella organization CF Europe Not specified Groft (2013) [23] United States Rare diseases in general Patient organizations • Patient organizations fund research conducted within the RDCRN, including travel clinics to facilitate patient access to investigators and studies within the RDCRN • Researchers in the RDCRN ranked direct funding as one of the top three benefits of interactions with patient organizations [154] Patient Partner [20] Not specified Rare diseases in general Patient organizations • Patient organizations finance or raise funds for clinical trials Not specified Development of or involvement in clinical trial organizations/networks Fajac (2013) [150] Europe CF Patient organizations • The ECFS established a clinical trial network (ECFS-CTN) comprised of 30 selected sites across 11 European countries • Current initiatives are to set up an trial, to implement central laboratories for outcome measures, further develop new surrogate end points, and establish a quality-improvement program Not specified Fajac (2013) [150] Europe CF Patient organizations • A patient organization representative sits on the Executive Committee of the ECFS-CTN and other representatives are invited to meet with the Executive Committee once a year Not specified Fajac (2013) Europe CF Patient organizations • Patient organizations are invited to ECFS-CTN steering committee meetings twice a year Not specified
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