DSMIG Winter Meeting, The Croke Park Hotel, Dublin, 4th November 2022
Chaired by: Professor Edna Roche, Professor in Paediatrics
Dr Jill Ellis, Consultant Community Paediatrician & President of DSMIG
Chaired by: Professor Edna Roche, Professor in Paediatrics
Dr Jill Ellis, Consultant Community Paediatrician & President of DSMIG
Applications for the 2022 award are welcomed from healthcare professionals or allied healthcare professionals by 1st August 2022.
This survey is designed to understand how the pandemic has affected children who have Down Syndrome by asking parents/carers about their child’s experiences. The project was developed by University College London in partnership with the Down Syndrome Association and the Trisomy 21 Research Society, and is led by Professor Monica Lakhanpaul.
Please share the link below with your networks:
T21RS are undertaking research on COVID-19 vaccination in people who have Down syndrome.
The research involves clinicians and carers and 16+ people who able to partake to complete an online survey.
National ethical committee approval has been sought, you may wish to run it by your own ethics.
Please see the latest update related to Covid-19, below. Please see here for general information.
The NHS in the UK is now able to offer antibody and antiviral treatments for those with coronavirus ( COVID 19) infection who are at highest risk of becoming seriously ill from the infection. Treatments have been available for some people seriously ill in hospital since September 2021. As from 20 December 2021, neutralising monoclonal antibody treatment can be offered to people in the community aged 12 and over who have tested positive via PCR , and are in certain vulnerable groups .
People with Down syndrome over the age of 12 are included in the list of those with highest risk .
Those who may be eligible will be identified by the NHS centrally, and local pathways are being set up to administer treatment .
Further details can be found on the Down’s Syndrome Association website or via www.nhs.uk/conditions/coronavirus-covid-19/treatments-for-coronavirus/
COVID-19 is an infectious disease caused by a type of coronavirus (SARS-CoV-2) not previously seen in humans, primarily affecting the respiratory system. As it is only recently identified we are still learning about COVID – 19. We have included here information about COVID-19 and how it relates to people with Down syndrome. The information will be updated as more becomes available.
Research, published October 2020, indicates that people with Down Syndrome are at higher risk of severe outcomes from COVID-19. Research published in the British Medical Journal and Annals of Internal Medicine, found increased risk of hospitalisation and serious illness in adults (aged 18 and above) with Down syndrome. There were similar findings in a study published in Genetics in Medicine .The increased risk is age related, and mainly relates to older adults and those with other medical conditions that also increase the risk from COVID-19. Research published July 2021 in the British Medical Journal also showed increased risks for people with Down syndrome.
This information led to the U.K. Department of Health and Social Care issuing new guidance on 4th November 2020 to include adults with Down syndrome on the list of those considered clinically extremely vulnerable to COVID-19. This advice had a significant impact on people’s lives and those affected, their families and carers were advised to discuss the implications of this with their GP or other health care professional, taking into account their individual health needs and personal circumstances.
The Trisomy 21 Research Society (T21RS) has published findings of an international study which has similar findings but does also include children. The data on children and young people is still limited, but suggests that children with Down syndrome are not at the same increased risk as older adults, and should not be included in the clinically extremely vulnerable list , except for a very small number who may be included because of an associated medical condition, (essentially only those on immunosuppressive drugs or severe immunodeficiency). COVID -19 shielding advice for children and young people has been written by the RCPCH describing which children should be included in the highest risk groups. T21RS are also undertaking research into COVID-19 vaccines.
The majority of children and young people with Down syndrome will not be in those high risk groups and should still be able to attend school or college, following government advice on use of face masks, handwashing, avoiding exposure to those known to be affected and social distancing. Details on NHS website.
It is important for people who have Down syndrome and their families to understand the implications of the government advice. This is available in an easy read format on the Down’s Syndrome Association, Down’s Syndrome Scotland and Down Syndrome Ireland websites.
People with Down syndrome may be at greater risk of other infections aside from COVID-19. It is therefore also important to maximise other measures recommended to minimise the risk of infections including routine and additional immunisations, and treatment of other medical problems that may predispose to infection.
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.
Adults with Down syndrome have been offered Covid 19 vaccine according to the prioritisation set out by the UK Joint Committee on Vaccination and Immunisations.
Further information can be found in the Immunisation against infectious disease Green book Chapter 14a and the RCPCH Coronavirus vaccination programme statement.
As the Covid-19 pandemic develops we will develop a greater understanding of how the disease affects different groups of people, including those with other health conditions and for those who have Down syndrome. We will endeavour to keep health professional colleagues working with people who have Down syndrome with information as it becomes available.
Below we have collected some resources that we feel are useful.
Up to date advice is available via the NHS website.
Advice also available via UK Government website.
Advice for Health professionals
Comprehensive advice has been prepared by the Royal College of Paediatrics and Child Health COVID-19 guidance for paediatric services.
Resources for Community Paediatricians are available on the British Association for Community Child Health website.
NHS England has produced a Clinical guide for front line staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic – relevant to all clinical specialities.
Advice for parents, carers and people who have Down syndrome
There are two recent DSA Journal articles Preventing infection in children with Down’s syndrome and Recognition of Serious Illness in Children with Down’s syndrome.
Advice on infections is also included in the new 2020 version of the Personal Child Health Record DS insert on pages 9 and 16.
Similar useful information is also available on Down Syndrome Ireland website
General information about Coronavirus for parents can be found here
Wide ranging advice, with links to national and regional resources , and helplines has been compiled by the Disabled Children’s Partnership
Up-to-date Government guidance and information for practitioners and parents and carers on issues related to education, health and social care to help support disabled children during the Coronavirus outbreak has been collated by the Council For Disabled Children
Include Me Too have developed COVID 19 Hospital Communication Passport for disabled children, young people & adults .Providing vital information to support their safety, dignity, access, communication, sensory, physical & personal care needs.
If you have any further suggestions of information about COVID-19 or useful resources we should put on the website please email email@example.com
Vaccinations for children
The JCVI is advising that children at increased risk of serious COVID-19 disease are offered the Pfizer-BioNTech vaccine.
That includes children aged 12 to 15 with severe neurodisabilities, Down syndrome, immunosuppression and multiple or severe learning disabilities.
The JCVI also recommends that children and young people aged 12 to 17 who live with an immunosuppressed person should be offered the vaccine. This is to indirectly protect their immunosuppressed household contacts, who are at higher risk of serious disease from COVID-19 and may not generate a full immune response to vaccination.
The T21RS data suggests that young people who have Down syndrome are at a greater risk of developing complications related to COVID-19, although the numbers were low and the evidence relates to data collected during the first wave of COVID-19 i.e. till June 2020.
The vaccine is being offered to decrease the severity of COVID-19 disease, if contracted.
Real-world data on the safety of COVID-19 vaccines in children is currently limited, but there have been extremely rare reports of myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the membrane around the heart) following the use of the Pfizer-BioNTech and Moderna vaccines in millions of younger adults. We do not know why this occurs, an underlying cardiac condition does NOT make the person more vulnerable.
The vaccine prevents severe disease, but does not necessarily prevents anyone from getting COVID-19 or PIMS.
It is important to reassure families that being offered vaccination is not equated with being Clinically Extremely Vulnerable. The vast majority of children with severe disabilities are not CEV and it is important that the families do not go back to shielding and children not going to school. The decision if a child/ young person is clinically extremely vulnerable is dependent on their underlying associated medical condition e.g. receiving chemotherapy or immunosuppressive medication etc.
We are aware that children and young people with a severe and moderate intellectual disability, would find it a challenge to maintain measures to prevent contracting COVID-19, e.g. tolerance to wear a face mask and strict hand hygiene measures and in addition may find hospitalisation a more challenging experience. It is for these reasons young people with a significant intellectual disability are being offered the vaccine.
We are unaware of any deaths from COVID-19 in children with Down syndrome in the U.K.
For further information visit the JCVI site https://www.gov.uk/government/news/jcvi-issues-advice-on-covid-19-vaccination-of-children-and-young-people
Analysis of various data sources collected during the COVID-19 pandemic has established that individuals with Down syndrome are at increased risk for both hospitalisation and mortality after infection with SARS-CoV-2. Adults with Down syndrome were amongst the highest risk groups for mortality. Furthermore, there have been concerns that, when admitted to hospital during peak infection periods and when demands on resources are high, people with disabilities and long-term conditions may not be prioritised for access to scarce resources such as respiratory ventilation or intensive care beds.
It has been the clinical experience of many Down syndrome clinics in different countries that COVID-19 vaccines can be safely given to children (from age 12) and adults with Down syndrome. There are also reasonable indications that full vaccination offers significant protection against the poor outcomes associated with infection in people with Down syndrome. However, based on our understanding of the immune response in Down syndrome, including reduced numbers of and differences in memory B cell responses, and previously published studies on the immunological response of those with Down syndrome to other vaccines, their antibody response to vaccination may be less robust when compared to peers without Down syndrome.
We therefore recommend that individuals with Down syndrome should be amongst those prioritised for booster vaccination for persistent production of antibodies against COVID19 antigen. There have been some indications of additional benefit by combining vaccines from different sources (e.g. Pfizer and Moderna, or Moderna and AstraZeneca) to promote better immune responses based upon studies in the general population, but any booster is preferable to none.
Selected references/ further reading:
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 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.
Demonstration site https://growth.rcpch.ac.uk/
Open forum including information for developers https://openhealthhub.org/c/rcpch-digital-growth-charts/47
Any enquiries – firstname.lastname@example.org
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 .
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.
The 2020 Jennifer Dennis Research Award will be postponed because of the Coronavirus outbreak .
Please see here for revised submission deadlines and details of the award.