Abstract #5: Enhancing the Role of the Public in Clinical Research: The Effectiveness of a Multi-Disciplinary Training Program in Increasing Knowledge about the Clinical Research among People with Parkinson's

• Published in: Neurotherapeutics Vol. 6; no. 3; p. 605
• Main Authors: Todaro, Veronica L., Elliott, Robin
• Format: Journal Article
• Language: English
• Published: Elsevier Inc 01-07-2009
• ISSN: 1933-7213; 1878-7479; 1878-7479
• DOI: 10.1016/j.nurt.2009.03.006

To assess the potential of a multi-day training program to increase participants capacity, and comfort, in disseminating information about clinical research.
Enhancing the role of the public in the clinical research enterprise, a strategic imperative of the National Institutes of Health, is becoming recognized as a critical variable in building public trust in and support for research, as well as reducing barriers in moving research from bench to bedside.
As a sub-population with interests in the outcomes of clinical research, patients have a special need for the knowledge and skills to effectively serve as representatives with the clinical research enterprise.
In July 2008, the Parkinson's Disease Foundation launched the Clinical Research Learning Institute (CRLI) to address this need within the Parkinson's community. CRLI planning committee members and faculty included members of the Parkinson Study Group, the private sector, and people with Parkinson's.
A survey was administered to all 24 CRLI participants following each session to assess the increase in knowledge on session content as well as their degree of comfort in disseminating this information to others.
For six of the seven sessions, over 60% of the participants reported an increase in knowledge of the content presented. In five of the seven sessions, over 50% of participants reported that their comfort in disseminating information increased.
The majority of CRLI participants saw an increase in knowledge and degree of comfort in speaking on clinical research topics. Further analysis is now underway to identify and assess the opportunities that participants are pursuing in helping to advance clinical research.