Next DSMIG meeting Thursday 17th June 2021 to be held jointly with BACD and BSPGHAN at the RCPCH online conference

Register now

The next DSMIG meeting will be held as part of the RCPCH online conference which has now been rescheduled for June 2021.

This year there will be a joint meeting with DSMIG, BSPGHAN and BACD with a general theme of gastrointestinal issues in children who have Down Syndrome and also parent perspectives of having a child with disability during COVID. I am sure a lot of information and experiences can be generalised to other children that we manage in our clinical practice.

The date of the meeting is Thursday 17th June 2021 15:30-18.00 and details for registration will be on the college website.

https://www.rcpch.ac.uk/news-events/rcpch-conference

Please see the attached RCPCH Flyer June 2021 Please do share this flyer within your local networks.

World Down Syndrome Day (WDSD) 2021

DSMIG supports World Down Syndrome Day (WDSD) 2021

WDSD is a global awareness day recognised since 2012 by the UN, which takes place on 21 March every year.

On WDSD people who have Down syndrome, their families, friends and advocates, work to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people who have Down syndrome play a vital role in lives and communities.

The theme for WDSD 2021 is ‘CONNECT’ – the focus will be about improving connections to ensure that all people who have Down syndrome can CONNECT and participate on an equal basis with others.

The COVID-19 pandemic has forced many of us, individuals and organisations, to adapt the ways that we connect and communicate with each other.

It is important to find new ways of connecting that are accessible to everyone.

Find out how you can get involved here: World Down Syndrome Day | Down Syndrome International (ds-int.org)

Medical vulnerability of individuals with down syndrome to severe COVID-19 – data from the trisomy 21 research society and the UK ISARIC4C survey published by The Lancet

International study finds increased COVID-19 mortality among adults with Down syndrome

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.

 

NEXT DSMIG meeting Thursday 17th June 2021 to be held jointly with BACD and BSPGHAN at the RCPCH online conference

The next DSMIG meeting will be held as part of the RCPCH online conference which has now been rescheduled for June 2021.

This year there will be a joint meeting with DSMIG, BSPGHAN and BACD with a general theme of gastrointestinal issues in children who have Down Syndrome and also parent perspectives of having a child with disability during COVID. I am sure a lot of information and experiences can be generalised to other children that we manage in our clinical practice.

The date of the meeting is Thursday 17th June 2021 15:30-18.00 and details for registration will be on the college website.

DSMIG are welcoming abstracts for poster or oral presentation and I would be grateful if you or your colleagues (including multidisciplinary team members) would consider submitting these. Please do share this flyer within your local networks.

Abstracts submission deadline is 4 weeks away on 10th March!  Further info on abstract submissions below:

https://www.rcpch.ac.uk/news-events/rcpch-conference

COMING SOON – New RCPCH Digital Growth Chart Project to include Down syndrome Growth Charts

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 is working with the RCPCH to include the UK Down Syndrome Growth Charts in this product .

The Digital Growth Charts will launch in early 2021, and we will provide updates  about the  Down syndrome charts as they become available.

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://rcpch-dgc-react-client-unstable.azurewebsites.net/

Open forum including information for developers https://openhealthhub.org/c/rcpch-digital-growth-charts/47

Any enquiries – growth.digital@rcpch.ac.uk

 

 

 

 

New Covid-19 Information – vaccine and UK variant

Covid-19 Update – New UK Variant and Vaccines

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

Covid-19 and Down syndrome survey

Trisomy 21 Research Society (T21RS) is an international non-profit scientific organization of researchers studying Down syndrome.  See the latest results from their Covid-19 and Down syndrome survey here

 

NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment

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.

 

 

Growing concerns regarding late presentation for medical help for non-COVID related illness

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