Clinical Research Learning Institute
Encyclopedia
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.
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. 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. 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.
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.
Parkinson's Disease Foundation
The Parkinson's Disease Foundation is a leading national presence in the United States in Parkinson's disease research, education and public advocacy. PDF funds scientific research to find the causes of and a cure for Parkinson's...
(PDF) designed to prepare people with Parkinson's disease
Parkinson's disease
Parkinson's disease is a degenerative disorder of the central nervous system...
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
Clinical trial
Clinical trials are a set of procedures in medical research and drug development that are conducted to allow safety and efficacy data to be collected for health interventions...
coordinators, officials from relevant government agencies, pharmaceutical industry representatives, and past Learning Institute graduates.
Objectives
PDF launched the Learning Institute to align with a strategic imperative of the United States National Institutes of HealthNational Institutes of Health
The National Institutes of Health are an agency of the United States Department of Health and Human Services and are the primary agency of the United States government responsible for biomedical and health-related research. Its science and engineering counterpart is the National Science Foundation...
to enhance the role of the public in the clinical research enterprise and, ultimately, remove barriers that delay new treatments
Treatments of Parkinson's Disease
As Parkinson's disease is a chronic disorder, Treatment of Parkinson's Disease requires broad-based management including patient and family education, support group services, general wellness maintenance, exercise, and nutrition...
and cures from reaching the patient population. 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. 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.
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.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.