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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