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Persons with Prader-Willi syndrome have been known to have a high mortality rate. However, intellectual disability, which usually accompanies Prader-Willi syndrome, is also associated with a higher mortality rate than in the general population. In this study, the death rates in a longitudinal cohort of people with Prader-Willi syndrome are compared with those for an epidemiologically derived control sample of people with intellectual disability from other causes.
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Prader-Willi syndrome (PWS) is a rare, complex, neurodevelopmental genetic disorder that is associated with hyperphagia and morbid obesity in humans and leads to a shortened life expectancy. This report summarizes the primary causes of death and evaluates mortality trends in a large cohort of individuals with PWS.
The US Prader-Willi Syndrome Association (PWSA (USA)) syndrome-specific database of death reports was collected through a cursory bereavement program for PWSA (USA) families using a brief survey created in 1999.

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Prader-Willi syndrome in Victoria: mortality and causes of death.

J Paediatr Child Health 2012 Jun 16;48(6):506-11. Epub 2011 Nov 16.
Tess Lionti, Susan M Reid, Margaret M Rowell
The aim of this study was to describe the rates, predictors and causes of mortality in a population sample of individuals with Prader-Willi syndrome (PWS).
One hundred sixty-three individuals with PWS (90 males and 73 females, ages: 3 weeks to 60 years) were identified from the Victorian PWS Register. Information on demographics, age at diagnosis, genetic mechanism, age at which obesity developed and last known body mass index measurement were extracted.

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Obsessive-compulsive disorder has been reported in association with Prader-Willi syndrome.
To report the nature and prevalence of compulsive and similar symptoms associated with Prader-Willi syndrome in a population ascertained as completely as possible.
Attempted complete ascertainment of people with Prader-Willi syndrome in eight English counties.

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The past two decades have seen a great improvement in the care of people with Prader-Willi syndrome (PWS), particularly with regard to control of diet and behaviour management. Has this affected mortality rates or thrown up new issues regarding premature ageing or dementia? We investigated two aspects of ageing in people with PWS: (1) an estimate of mortality over 9 years in a cohort of people with PWS, originally recruited in 1998-2000; and (2) premature ageing or dementia in people aged ⩾40 years.
(1) A follow-up of the population-based 1998-2000 cohort to investigate the subsequent mortality rate; and (2) the recruitment and structured assessment of all members of the Prader-Willi Syndrome Association UK (PWSA-UK) aged ⩾40 years who agreed to participate.

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