Focus on behavioural problems of adults with Prader-Willi syndrome identifies need for longitudinal studies.


This study looked at the behavioural phenotype of people with Prader-Willi syndrome and the relationship between behavioural problems and age groups, genetic subtypes and BMI categories.

It found statistically significant differences between age groups and between genetic subtypes but none in different BMI categories.

The authors suggest that special attention should be paid to behavioural problems as part of general management of adults with PWS, and suggest the need for longitudinal studies to gain more insight into the natural history and course of behavioural problems in adults and older people with PWS over the long term.

Behavioral phenotype in adults with Prader–Willi syndrome, Sinnema M et al, in Research in Developmental Disabilities, 32, 2, 604-612

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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