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Table 4 Top challenges 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 26 PAGs answering question
Attend Consortium investigator meetings 1 7 % 3 12 %
Communicate Consortium activities within the patient community    2 8 %
Contribute to Consortium website design and content 1 7 % 1 4 %
Help with patient recruitment for RDCRN studies 1 7 % 4 15 %
Include Consortium activities, updates, or relevant sessions at PAG meetings    1 4 %
Other communication activities    4 15 %
Other research activities 1 7 %   
Participate in Consortium conference calls 2 13 % 3 12 %
Provide administrative support to Consortium 1 7 %   
Provide direct funding to the Consortium 4 27 % 1 4 %
Provide funding or other support to PAGs 1 7 %   
Provide funding support for Consortium meetings/activities 1 7 %   
Provide partial or full funding for Consortium trainees 2 13 % 1 4 %
Received funding or other support from Consortium    2 8 %
Review protocols and provide substantive input on study design 2 13 % 6 23 %
Review study forms and other related documents 1 7 % 4 15 %
  1. PIs principal investigators, PAG patient advocacy group