Wednesday, March 12, 2014

Community Participatory Research!

"This is an era of participatory research. We do not want to do research on people with Down syndrome. We want to do research with people with Down syndrome." 
-Brian Skotko

Research Triangle Institute International (RTI International, or RTI) is one of the world’s leading research institutes, dedicated to improving the human condition by turning knowledge into practice. Led by a staff of more than 3,700, RTI provides research and technical services to governments and businesses in more than 75 countries.

RTI specializes in the areas of health and pharmaceuticals, education and training, surveys and statistics, advanced technology, international development, economic and social policy, energy and the environment, and laboratory testing and chemical analysis.

RTI is one of several research companies that see the value of communities being actively engaged in research that directly affects their lives and the lives of those with similar circumstances. Wall Street Journal recently profiled several cutting edge studies targeting individuals with intellectual disabilities, including a Fragile X study funded by the NIH that RTI is conducting.

The study, entitled "Decisional Capacity and Informed Consent in Fragile X Syndrome," focuses on new techniques to permit decision making in populations that might have differences in comprehending the "standard" types of informed consent forms.

To learn more about the potential impact of this intriguing study, please read the article:

http://m.us.wsj.com/articles/SB10001424052702304250204579431193819412078?mobile=y