World’s longest running research project in to Down’s syndrome

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Dr Janet Carr, Honorary Senior Researcher at Tizard, is currently finalising the most recent findings of her 50 year old research study with people with Down’s syndrome and their families.

After half a century Janet Carr has just completed the longest running research project.  The longitudinal study began with 54 babies born in the year to November 1964 and living with their families in the south-east of England.  Driven by an interest in people and behaviours Carr’s aim was to establish the children’s educational needs using intelligence tests such as pattern-making.  The research which began when the babies were six weeks old, was conceived by the Medical Research Council psychiatric genetics research unit in London’s Maudsley Hospital.  It was initially intended to last just 10 months but the then young researcher wanted to look longer term and explore family interactions.

“I thought, as well as looking at how the little people are, I’d like to look at how it affected their families.  It was widely accepted that having a baby with a disability meant that it would be a disaster, that families would break up.  That’s what I expected to find” Dr Carr recalls.  In fact she discovered that while the babies development was slower than their non-disabled peers, families coped well as the children grew, with youngsters bonding and developing good relationships with their brothers and sisters.

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