Table 1 RDCRN consortium-patient advocacy group partnership survey response
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 |