Principal investigators | Patient advocacy groups | |||
---|---|---|---|---|
Benefit | No. of PIs selecting | % of 15 investigators answering question | No. of PAGs selecting | % of 28 PAGs answering question |
Attend Consortium investigator meetings | 3 | 20 % | 14 | 50 % |
Communicate Consortium activities within the patient community | 6 | 40 % | 6 | 21 % |
Contribute to Consortium website design and content | 2 | 13 % | 1 | 4 % |
Help with patient recruitment for RDCRN studies | 11 | 73 % | 13 | 46 % |
Include Consortium activities, updates or relevant sessions at PAG meetings | 1 | 7 % | ||
Include Consortium activities, updates or relevant sessions at PAG meetings | 6 | 21 % | ||
Other communication activities | 3 | 11 % | ||
Other research activities | 1 | 7 % | 4 | 14 % |
Participate in Consortium conference calls | 3 | 20 % | 15 | 54 % |
Provide administrative support to Consortium | 1 | 7 % | ||
Provide direct funding to the consortium | 4 | 27 % | 3 | 11 % |
Provide educational materials related to Consortium activities for patient community | 2 | 13 % | ||
Provide funding support for Consortium meetings/activities | 2 | 13 % | ||
Provide logistical support for Consortium meetings, calls, etc. | 3 | 20 % | 1 | 4 % |
Provide partial or full funding for Consortium trainees | 3 | 20 % | 1 | 4 % |
Received funding or other support from Consortium | 2 | 7 % | ||
Review protocols and provide substantive input on study design | 2 | 13 % | 2 | 7 % |
Review study forms and other related documents | 1 | 7 % | 3 | 11 % |