Health and medical professionals

Information, help and advice for health and medical professionals

In this section, you will find the Medical Management Guidelines for Children and Adolescents with Down syndrome which include the most up to date research and information on Down syndrome, you will also find information on the latest research into Down’s Arthritis and what symptoms to look out for and more.

  • Medical management guidelines for children and adolescents

    Down Syndrome Ireland has worked for many years alongside the Department of Paediatrics and Child Health, Trinity College, Dublin and the National Children’s Hospital, Tallaght to carry out ongoing research within the area of Down syndrome so that medical professionals have access to the most up to date research and information on Down syndrome.

    The Medical Management Guidelines for Children and Adolescents with Down syndrome in Ireland provide medical professionals with advice on monitoring the health of babies and children with Down syndrome. They cover growth, cardiac disease, thyroid disease, ophthalmic disorders, hearing impairment and cervical spine instability.

    The guidelines were first developed in 2001 with support from Down Syndrome Ireland and the Down Syndrome Medical Interest Group UK and Ireland. They are reviewed regularly to ensure the latest medical research is included.

  • Down’s arthritis

    There is an increased risk of juvenile arthritis in children with Down syndrome. Despite this, a significant delay in diagnosis exists.

    Down Syndrome Ireland was involved in important research to increase awareness of the condition and work towards improving the care of children with Down syndrome who have been diagnosed with arthritis.

    The research shows:

    • Down’s Arthritis is 18-21 times more common than JIA in the general Paediatric population.
    • Have a high index of suspicion of Arthritis when assessing a child with Down syndrome presenting with change and/or deterioration in function and mobility.
    • Small joints, wrists and knees are the most commonly affected sites.
    • Down’s Arthritis may often be insidious and asymptomatic.
    • A child with Down’s Arthritis may present with minimal clinical signs, i.e. joint pain, joint swelling or early morning stiffness.
    • Look for subtle signs from clinical examination that may suggest a possible diagnosis of Down’s Arthritis, e.g. loss of range or loss of hyperextension, especially if there is asymmetry between both sides. This may suggest restrictions from undiagnosed/untreated Down’s Arthritis.
    • MRI with gadolinium contrast should be the gold standard for definitive diagnosis of Down’s Arthritis. Consider if any concerns, as clinically there can be little to aid with diagnosis.
    • Children with Down syndrome should have a Musculoskeletal Assessment as part of their Annual Surveillance Programme.

    Download the Down’s Arthritis research – preliminary research findings here.

  • Contact us

    Our Clinical Research Fiona McGrane is the only nurse in Ireland who specialises in Down syndrome. Please contact us at if you would like to contact her.