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Table 1 RDCRN consortium-patient advocacy group partnership survey response

From: The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

Survey question: what impact has your (associated) PAG(s) had with your RDCRN consortium activities in each of the following areas? Consortium PIs (N = 17) PAGs (N = 28)
  Engage in activity (%) Mean Median Engage in activity (%) Mean Median
Research       
Review protocols and provide substantive input on study design 14 (82) 4.2 5 21 (75) 4.5 5
Review study forms and other study related documents 16 (94) 4.3 4 19 (68) 4.6 5
Participate in Consortium conference calls 16 (94) 4.6 5 25 (89) 4.7 5
Attend Consortium investigator meetings 16 (94) 4.8 5 21 (75) 4.8 5
Help with patient recruitment for RDCRN studies 16 (94) 4.7 5 24 (86) 4.5 5
Provide logistical support for Consortium meetings, calls, etc. 14 (82) 4.2 4.5 18 (64) 4.3 5
Provide administrative support to Consortium 14 (82) 3.8 3.5 14 (50) 4.3 4.5
Communication/Outreach       
Contribute to Consortium website design and content 14 (82) 4.5 5 22 (79) 3.9 4
Include Consortium activities, updates or relevant sessions at PAG meetings 17 (100) 4.7 5 24 (86) 4.6 5
Communicate Consortium activities within the patient community through website, newsletters, etc. 17 (100) 4.8 5 27 (96) 4.7 5
Provide educational materials related to Consortium activities for patient community 15 (88) 4.9 5 23 (82) 4.6 5
Funding       
Provide direct funding to the Consortium 13 (76) 4.5 5 16 (57) 4.3 5
Provide funding support for Consortium meetings/activities 14 (82) 4.4 5 18 (64) 4.1 4
Provide partial or full funding for Consortium trainees 12 (71) 4.2 4.5 13 (46) 4.2 4
Provide in-kind support (not necessarily funding) for Consortium activities (e.g., mailings, office staff, other) 14 (82) 4.4 4 17 (61) 4.4 5
  1. RDCRN Rare Diseases Clinical Research Network, PIs principal investigators, PAG patient advocacy group
  2. Scale: 1 = very negative, 2 = somewhat negative, 3 = no impact, 4 = somewhat positive, 5 = very positive. N total number of Consortium PIs or PAGs that participated in the survey