Friday, February 24, 2012

The Never Ending Autism Study. But, it is all good!!

Here is the info on what we did via the NESCA website



Children's Hospital Boston Research on Autism Spectrum Disorders
Children's Hospital Boston has asked our help in recruiting families to participate in their ongoing research study of possible genetic and environmental factors in the causation of autism spectrum disorders (ASD).

Participation will ordinarily require two hospital visits, the first generally lasting 4 - 5 hours and the second, about two hours, although these are estimates. Families may also choose to complete their involvement in a single, full-day appointment, from 9:00am - 4:00pm. Children's Hospital will validate parking for all participants, and families opting for the full day will also receive cafeteria meal vouchers.

Here's their information:


Autism Spectrum Disorder (ASD)
Study at Children’s Hospital Boston

· Who we are
We are a group of doctors and researchers from the Developmental Medicine Center, the Division of Genetics, the Department of Neurology, and the Program in Genomics at Children’s Hospital Boston.

· What we study and its importance
We are studying ASD and related disorders in order to better understand why they occur, increase our ability for early identification, and find improved treatments and an eventual cure. Specifically, we collect information on children aged 18 months and up who are diagnosed with ASD and their families.

· Your involvement
Participation in this study involves two research visits at Children’s Hospital Boston. We interview all immediate family members, including the individual diagnosed with ASD. The data we collect includes general facts about developmental history, family history, and environmental information. We also collect genetic material from a blood or saliva sample in order to look for possible gene changes that may be related to ASD.

Shortly after the visits, families receive a research report of our observations that includes developmental, cognitive, behavioral and social findings.

If you are interested in participating or would like more information, please contact us at 1-866-982-5826 (toll-free) or 617-355-9152. You can also email us at ASDResearch@childrens.harvard.edu.

We were also sent home with homework and $120 worth of American Express gift cheques. $40 per kid.


And a little homework. These envelopes were stuffed full of info on all five of us. Asking questions on behavior and communication over and over again in different ways. Making sure we answered the question the same way every time.  This took about 2 hours.



I also got a one hour follow up call this week filling in any questions that were unanswered and agreed to do a 2 hour over the phone interview/ research study to help them come up with a form to better identify children with autism at regular pediatricians visits.

I have a feeling I will be asked to do more.  But, the more we can do as a family, the further I hope we can get the information we need to help identify and find treatments or cures for Autism.

Plus they have to tell us anything they find in our gene pool that is treatable. This is for our entire lives. We gave them permission to use our blood for any research studies they would like. We can either decide to participate in interviews/paperwork (or not) that are associated with new studies.


This was well worth it for our family in more ways than one and probably will not end for a long time.

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