People with Down syndrome on the whole do not have medical problems that differ from those in the general population. However some medical conditions are overrepresented. Most of these are treatable disorders which, if undiagnosed, impose an additional but preventable burden of secondary handicap.
The DSMIG surveillance guidelines have been developed on the basis of available evidence by a group of clinicians with a special interest in Down syndrome. They are updated as new research and audit evidence becomes available. The Royal College of Paediatrics and Child Health has been supportive of the venture and we have had guidance from the Centre for Evidence Based Child Health.
The guidelines are not a blueprint for Gold Star services. Their purpose is to set out a minimum safe standard of basic medical surveillance which we consider essential for all those with the syndrome in the UK and Republic of Ireland.
This we consider to be the identification of:
- cardiac disease
- thyroid disorder
- ophthalmic problems
- and the appropriate monitoring of growth.
We have also included information which we hope will increase understanding of the complex issues surrounding cervical spine disorders.
We are currently producing clinical awareness notes which cover other conditions. These will be posted on this site as they become available.
(This guidance was first issued in January 2018 and has been updated to include the new guidance on transient leukaemia of down syndrome)
Guidelines review schedule
Our guidelines are reviewed as and when time allows. The situation as of June 2017 is as follows:
- Full evidence-based revision (2012) available online
- Revised as Best Practice Guidance for the management of hearing issues in Down syndrome (June 2017)
- Full evidence-based revision (2007) available online
- Cervical spine disorders
- Full evidence-based revision (2012) available online.
- Informal review in the light of recent published work suggests no change necessary at the moment (2011)
- Full evidence based revision (2012) available online.
- Neonatal Guidance
- Available online (2018)