Interactive Autism Network (IAN) Officially Launched
Data Collection - Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN’s goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.On a related note, the National Autistic Society has launched an online questionnaire for autistic adults living the United Kingdom. This project is intended to gather information in order to help improve services to British adults on the autism spectrum.Research Recruitment - IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.
Community Building - the IAN project hopes to engage the entire autism community – from parents to policy makers to the media – in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.
While I am comfortable in joining online communities and sharing what may be considered personal information online, many people aren't. Kennedy Krieger makes the point that they are working hard to ensure privacy - but as we all know, every lock can be broken. How do you feel about joining an online community that requires sharing of medical and/or personal information? Will you join IAN?
Comments
I am an at-home Mom of two high-functioning Autistic boys. My husband is in the military. I read about the medical study for collecting data from families of Autism–I think its way over-due. I agree with the premise of how to do it. On-line security will certainly be an issue. But—the sharing of information, what works, what does not, and what to look for; these are indispensible components of dealing with Autism. I am currently dealing with the onset of puberty, and middle school, and a 9yr old who thinks he should be 15. Every day is a challenge, but I truely think that parents and the medical professionals at large could learn so much from each other–but you need to talk. Sharing is caring!!
I am a 29 yr old mother of 3 girls 12 10 and 6 the youngest of which has aspergers but is diagnosed as high functioning autistic due to early speech delay (dont yet fully understand it all as its only recently been fully diagnosed) anyway, i think the study as c.barrett says is long over due there is a lot we parents can learn from one another and certainly more we can tell/teach the world than any medical assessments are likely to have picked up in their random hours of observation. I hope people are not too worried about the privacy stuff because personally i know i would rather the world know who i am and what my daughters issues are and be aware of what we are going through than the mindless judgements that are made from ignorance. parents of people with an autism spectrum disorder need information and ideas about how to cope with raising their children and what is needed to help these kids have a decent quality of life. It’s not easy and feels very isolating at times it good to know your not alone if nothing else.
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