marjoram Report post Posted March 23, 2015 I have been contributing to a new collaborative project which aims to direct research with practical outcomes, to improve the lives of people on the autistic spectrum. It is a James Lind Alliance (JLA) project. This is a non-profit initiative. It takes specific health conditions and brings together people with that condition, families, support networks and clinicians to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they see as most important. This information will help ensure that those who fund health research are aware of what matters to us and to clinicians. It has also proved to increase government funding in other conditions that have previously carried out the initiative. Now, in partnership with the National Institute for Health Research and Autistica, the JLA are looking at autism. If you are interested in having your voice heard, there will be a survey opening in mid-April, where you can let the project know who you are and what issues you think should be researched. To find out more, become a partner on the project or register for updates click here. I hope that like me, you feel it is important that autistic people and those close to us participate in decisions which may affect our futures. Quote Share this post Link to post Share on other sites
stuffed Report post Posted March 25, 2015 Rolls eyes Quote Share this post Link to post Share on other sites
marjoram Report post Posted May 12, 2015 Hi, I posted a message a while back, about a survey that wants autistic people to participate in deciding priorities for future research. Many of us think we should have a say and now there is a chance to do so, as the survey is now open. Check out the survey. https://www.autistica.org.uk/research/top10/survey/ It is conducted by the James Lind Alliance. They do not conduct autism research themselves. I was involved with the initial setting up stage of this survey and am a member of Autistica's Science Advisory Group. The JLA process is supported by Autistica, The National Autistic Society, Autism Alliance and the Autism Research Trust. Quote Share this post Link to post Share on other sites