Guidance for Essential Medical Surveillance

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:

We have also included information which we hope will increase understanding of the complex issues surrounding cervical spine disorders.

Information on Heath issues not covered by the guidelines can be found on our topic pages .


Thyroid Disorder in Children and Young People with Down Syndrome updated April 2020

(please use the thyroid link above for guideline and related documents)

Neonatal Best Practice Guidance updated September 2018 

(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.
New thyroid guideline (April 2020) available online.
Full evidence based revision (2012) available online.
Neonatal Guidance
Available online (2018)

Archive Publications

Previous Versions of Guidelines

Hearing Impairment: Guidelines for Basic Essential Medical Surveillance (2007)

       Neonatal Best Practice Guidance (Jan 2018)