- Clinical Research Learning Institute
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The Clinical Research Learning Institute is an initiative of the Parkinson's Disease Foundation (PDF) designed to prepare people with Parkinson's disease to serve as advocates within the clinical research process. The program takes place annually over the course of three days, and includes training sessions and educational workshops led by experts intimately familiar with the Parkinson's clinical research process, including scientific researchers, clinical study coordinators, officials from relevant government agencies, pharmaceutical industry representatives, and past Learning Institute graduates.[1]
Contents
Objectives
PDF launched the Learning Institute to align with a strategic imperative of the United States National Institutes of Health to enhance the role of the public in the clinical research enterprise and, ultimately, remove barriers that delay new treatments and cures from reaching the patient population.[2] The Learning Institute also serves as part of PDF's larger advocacy program to advance the needs of people living with Parkinson's disease.
The Learning Institute prepares participants to play an active role in advancing the clinical research process, benefiting both the Parkinson's community as a whole and the individuals who take part. Specifically, the Learning Institute trains its graduates to serve as patient representatives on boards that review Parkinson's clinical research trials, to shape clinical research trials by providing sponsors and investigators with input on how the trials are designed and implemented, and to educate the community on the importance of clinical research and encourage participation. Learning Institute graduates may give talks and hold support groups within their communities to help accomplish these goals. [3] Graduates of the Clinical Research Learning Institute may also participate in online activities such as webinars to educate the Parkinson's community about clinical research. [4]
Outcomes
PDF created the Clinical Research Learning Institute in 2008. Since then, over 100 people from 36 states have graduated from the program. The 2010 Learning Institute took place from October 21 - 23 in Florham Park, NJ, and produced 40 new advocates.[5]
To measure the success of this endeavor, Learning Institute participants completed a survey after each session to assess if and how their knowledge increased, and how comfortable they were in sharing this knowledge within the Parkinson's community. A majority of participants showed an increase in knowledge and degree of comfort in speaking on clinical research topics. More evaluation is being conducted to determine the extent to which this knowledge played a role in advancing Parkinson's clinical research.[6]
References
- ^ http://www.pdf.org/en/crli
- ^ http://www.neurotherapeutics.org/article/S1933-7213(09)00054-3/abstract
- ^ http://www.northjersey.com/news/health/announcements/85451777_Local_Resident_Graduates_from_Parkinson_s_Research_Advocacy_Training_Program.html
- ^ "Inside Parkinson's Clinical Trials: What You Need to Know". http://www.pdtrials.org/en/educ_webinars. Retrieved 2010-08-09.
- ^ "PDF Graduates 40 New Ambassadors for Parkinson's Research". http://www.pdf.org/en/media_pr/release/pr_1288279338. Retrieved 2010-12-22.
- ^ http://www.neurotherapeutics.org/article/S1933-7213(09)00054-3/abstract
External links
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