SSBP - About SSBP

ABOUT

WHAT IS THE SSBP?

The SSBP was set up in the UK in 1987 by a small group of doctors, psychologists and research workers who had been investigating behavioural and emotional aspects of biologically determined syndromes associated with intellectual disability (mental retardation). The impetus for this early research had derived in each case from parent groups. Parents and carers usually said that, of all the problems and worries they had about their disabled relative, it was often unusual or problematic behaviour which they least understood and with which they found it most difficult to cope. Relatives also often said that children with the same disorder seemed to behave in a similar way.

WHAT IS A BEHAVIOURAL PHENOTYPE?

One definition is:

A characteristic pattern of motor, cognitive, linguistic and social abnormalities which is consistently associated with a biological disorder

The concept of behavioural phenotypes is intended to form a basis for research into behavioural, emotional, and other apsects of biologically determined syndromes associated with intellectual disability or mental retardation. The aim is to encourage research and information sharing. The Society has members who would disagree with the above definition!

AIMS OF THE SOCIETY

1. Promote and facilitate research into the aetiology, clinical characterisation and treatment of behavioural phenotypes
2. Encourage collaboration and communication between clinicians and researchers
3. Promote education, both of the scientific and clinical communities and of the lay public.
4. Strive for the highest ethical standards in research and clinical practice.

ACHIEVEMENTS

Since 1990 the SSBP has organised many scientific meetings which have covered a wide range of syndromes and methodologies. In 1994 the Society's 3rd International Symposium was held in Maastricht in the Netherlands. Since then the Society has held International meetings in Dublin in the Republic of Ireland, Baltimore in the USA, Venice Italy, Whistler in Canada, Barcelona Spain and Palm Cove Australia . Recent Annual Scientific meetings have been held in Edinburgh, Cambridge, Birmingham, Oxford and Newcastle in the UK and a return visit to Dublin in 2006. The 2007 meeting was in two venues, the MIND Institute Sacremento and Squaw Creek, Lake Tahoe and 2008 was held in the beautiful Germany city of Cologne. Extended abstracts of papers given at these meetings give some idea of the scope of the Society and can be obtained from the Society's Administrative Secretary. The abstracts from the 2006, 2007 and 2008 meetings were published by Blackwells in the Journal of Intellectual Disability Research.

RESEARCH

The SSBP was awarded a project grant by the Medical Research Council to carry out the pilot phase for a comparative study of behaviours in 500 children, 50 with each of 10 different biologically determined mentally handicapping disorders. The pilot phase is now complete and we are seeking funding for the main project.

Another SSBP initiative has been the development of a postal questionnaire which can be used as a first stage instrument for investigating behaviours in biologically determined mentally handicapping disorders. This consists of a basic developmental enquiry followed by 6-8 questions in each of 8 behavioural domains. Nine studies have now used this instrument. The SSBP intends to publish a cross-syndrome comparative report on the first group of studies. The questionnaire can be purchased and used for a flat rate fee. A condition of use is that results are made available to a central database held by the Society, so that a body of information can be built up and used to compare syndromes.