Research by the Trisomy 21 Research society (T21RS) found increased COVID-19 mortality among adults with Down Syndrome compared to the general population, supporting the need to prioritize vaccination for those with the genetic disorder.
The results of the study were published this week in The Lancet’s EClinical Medicine.
Please note, we do not yet have the evidence related to children less than 16.
The Royal College of Paediatrics and Child Health has developed an API ( Application Programme Interface). This is a national , web-based tool that will allow those wishing to use online growth charts, including the developers of electronic patient records to build accurate, validated growth charts , with associated calculations into their applications.
DSMIG has worked with the RCPCH to include the UK Down Syndrome Growth Charts in this product .
In the mean time more general information about the RCPCH Digital Growth Chart for potential users and developers can be found using the links below.
Presentation ” Digital Child Growth Assessment- from print to digital “
Demonstration site https://growth.rcpch.ac.uk/
Open forum including information for developers https://openhealthhub.org/c/rcpch-digital-growth-charts/47
Any enquiries – growth.digital@rcpch.ac.uk
There is no current evidence that the new UK variant of COVID-19 strain is worse than the previous COVID-19 strain, in terms of severity of illness or risk of death. However, it does spread much more easily, and therefore it is really important to take strict precautions to prevent the spread of the virus. This includes maintaining strict hand hygiene, social distancing and wearing a mask.
As adults with Down syndrome are included in the list of people classed as clinically extremely vulnerable, they should be offered Covid 19 vaccine as part of that group. There is no evidence to suggest that the vaccine poses any additional concerns for people with Down syndrome compared with the general population, and all eligible adults should be offered and encouraged to have the vaccine. For further detail see here
There is very limited evidence of the safety or efficacy of the vaccine in children, and it should not be offered. It may be considered on an individual basis for older children/young people ( Over 12 years) who are extremely vulnerable and at high risk of exposure to infection. See here for further detail.
All information relating to Down syndrome and COVID -19 can be found here. This is being updated to take account of new research findings and updated UK government advice as it becomes available .
28.1.21
NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment now available
Further details also available on Thyroid disorder topic page
The new thyroid guidelines were officially launched on Friday May 22nd 2020
The event also introduced the 2020 update of the Parent Held Child Health Record insert.
There is growing concern that parents of children who develop medical problems during the current Covid-19 epidemic may not be accessing medical advice early enough and as a result are becoming seriously unwell with non-COVID related illness, which is amenable to treatment.
This may be particularly relevant for children ( and adults ) with Down syndrome who already have or may be vulnerable to a range of medical problems that are associated with Down syndrome .
Parents and Carers should be reminded that if they are worried about their child they should seek prompt medical advice via their GP , or 111 or in an emergency their local hospital Emergency Department .
For further information please see the COVID-19 Statement on delayed presentations from the Royal College of Paediatrics and Child Health( RCPCH ).
A poster has been produced by the RCPCH advising parents on when they should seek medical help during the Covid 19 epidemic – Advice for parents when child unwell or injured poster
Updated 11.4.20
For details please see the PCHR page
Neonatal Best Practice Guidance DRAFT be presented at RCPCH meeting 24th May 2017 , and will be finalised soon after.
The majority of the presentations from the last DSMIG meeting at the RCPCH spring meeting April 2016 are now available for DSMIG members
The remainder will be uploaded when available.
