Introduction - DS/ASD research

[Guest guest]

Hello.

I would like to introduce myself to all of you, though some of you I

have been fortunate enough to meet in person. My name is Molloy. I

have a daughter with autism who is now 14 years old. She does not have

Down syndrome, but because of her I left my old life in pediatric

emergency medicine to develop a program of autism research at Cincinnati

Children's Hospital Medical Center, and the data sort of took me in

this direction. In the course of our work, we identified a region on

chromosome 21 linked to families (without DS) who had more than one

child affected by autism with a history of regression. About that time I

started having discussions with Dr. Bonnie , Director of the

Center for Down Syndrome here in Cincinnati and we realized that

regression occurred more often and, on average, at a much later age in

children with the dual diagnosis than in children with autism alone. I

will be presenting those findings at the International Meeting for

Autism Research next week in Seattle. And (again, thanks to some of

you), we have almost finished enrollment for our study of gene

expression in children with DS with and without autism.

My intent with joining the group now is to find out what you all would

want researchers to be looking for. You may be aware of the Interactive

Autism Network (IAN) that is funded by Autism Speaks and run by the

Informatics Division at s Hopkins:

http://www.ianproject.org/

This site includes a fairly comprehensive questionnaire for families

with ASD. The goal is to provide all interested researchers with

de-identified information on thousands of families. As yet there is

nothing directly about the dual diagnosis, but there is a meeting in

Baltimore in June to discuss additional questions and avenues of

research and I would like to see a link added for families with children

with DS/ASD. I would certainly appreciate your input on what kinds of

questions we should be asking. I will probably not be a very active

member of the group, but I will check in, and if you post or send

individual emails with ideas, I promise to try to get them added to the

research agenda. Thanks.

A. Molloy, M.D., M.S.

Assistant Professor of Pediatrics

Center for Epidemiology and Biostatistics

Cincinnati Children's Hospital Medical Center

3333 Burnet Avenue MLC 5041

Cincinnati, OH 45229-3039

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