Skip to main content

Table 3 Top benefits of consortium-patient advocacy group interactions

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

  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 %
  1. PIs principal investigators, PAG patient advocacy group