Dr. Jeanette Holden (Queen's University) is leading
a group of over 60 researchers, clinicians and parents
from across Canada and the US who have formed a
multidisciplinary research team called the Autism
Spectrum Disorders - Canadian American Research
Consortium (ASD-CARC). This group has secured funding
from the Canadian Institutes of Health Research
(CIHR) and the Ontario Mental Health Foundation
(OMHF) to:
¨ gain a better understanding of the biological
basis of ASDs,
¨ determine the very earliest of signs of ASD
during infancy,
¨ identify genes important in determining risk
for ASDs, and
¨ develop methods for identifying individuals
at risk for ASD during infancy so that treatments
can be introduced even earlier, optimizing outcomes
for children with ASDs.
How You Can Participate. You are invited to participate
in several different studies:
1) Autism Spectrum Disorders Research Registry.
If you have one or more children with ASD, please
register your family at www.autismresearch.ca.
Through the Registry we will inform families of
various studies and invite your participation.
We are asking for basic information, which may
help us to identify child and family factors that
may be shared with many other families with a
child with ASD, including ASD symptoms, obstetrical
history, family history, etc.
2) Genetics of ASDs. We invite families on the
Research Registry with two children with ASD or
with one affected child and another affected family
member in the extended family (e.g. parents, cousins,
nephews, etc.) to participate in genetics research.
By identifying the genetic factors across a large
number of families, we hope to be able to (a)
develop a simple blood test that will predict
who is likely to develop ASD, (b) learn how these
genes work to predispose an individual to ASD,
and (3) contribute to the development of dietary,
pharmacological or other treatments that could
reduce or eliminate symptoms. We will also notify
families on our Research Registry when we extend
genetic testing to families with one affected
member.
3) Clinical and Behavioural Studies in ASD. We
invite all families on the Research Registry to
participate in a variety of on-line questionnaires
about ASD symptoms or other related factors. Families
living close to one of our Regional Centres may
also be invited to participate in direct assessments.
All clinical and behavioural information about
the affected children and their families will
be associated with genetic information to determine
whether families who share the same genetic patterns
also share some of the same behavioural and family
characteristics, thus forming a "genetic
subgroup of ASD".
4) Prospective Study: Families with one or more
children with autism who have a new baby (under
1 year of age) are invited to participate in a
Prospective Study of Autism in which they will
be asked to track their infant's development over
the first three years of life. Our goal is to
develop an early detection tool for identifying
autistic symptoms before one year of life. With
early detection of ASD in children at-risk, our
plan is to develop very early intervention strategies
to prevent the full expression of autistic symptoms
in these infants.
5) Epidemiology of Autism Spectrum Disorders in
Canada. The Epidemiology study will examine specific
regions of Canada in great detail to determine
the prevalence and incidence of ASDs in Canada,
in order to help plan services and to determine
whether changing incidences are due to specific
causative factors.
Contact Information: Please register your family
in our Research Registry at www.autismresearch.ca.
For more information, contact Dr. Becky Ward by
email (autism@post.queensu.ca), phone (613) 548-4417,
ext. 1130, or mail (see below). We are very grateful
to all families who consider participating in
our studies. We know that your time is valuable
and that by participating you are helping not
only your own families, but future families as
well.
Thank you.
Becky Ward, PhD, C. Psych.
Clinical Research Coordinator
Autism Research Program (ASD-CARC)
Ongwanada Resource Centre
191 Portsmouth Avenue,
Kingston, Ontario K7M 8A6
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