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Research Support

We facilitate research which will benefit the lives of people who have Down’s syndrome and their families.

In 2019 – 2020 we advised on or supported 27 research projects.

We work with researchers by:

  • co-producing with people who have Down’s syndrome
  • advising on the development of projects and project materials
  • finding participants
  • raising awareness of the work of researchers through our website, social media channels, blogs and Journal articles

Researchers Seeking Participants

If you are a researcher at postgraduate level and beyond and seeking participants, we may be able to help you find them. First you will need to complete and submit the DSA Research Proposal form.

    Applications accepted by the DSA must meet the following conditions before they can be advertised:

    • The research is being conducted at postgraduate level or beyond
    • Completion and submission of:
    • Agreement to provide feedback to the DSA during and on completion of the research.
    • Provision of easy read information about your research.
      This requirement applies to any research that involves the recruitment of young people and adults who have Down’s syndrome as participants. This should include easy read consent forms where appropriate

    Please email the form and ethical approval letter to info@downs-syndrome.org.uk

    Defeating Dementia

    We support the University of Cambridge Defeating Dementia in Down’s syndrome Research Group (DiDS). The group conducts research studies to investigate the risk of dementia in people who have Down’s syndrome. The long term objective is to understand why people who have Down’s syndrome are at risk for Alzheimer’s disease so that safe treatments can be developed. The research studies will inform a clinical trial, so that scientists can find a drug to prevent this type of dementia from developing in people who have Down’s syndrome.

    DiDS Summer Autumn 2020 Newsletter

    The research group made this film to tell people about their work and to show that taking part in these studies can be fun and exciting for everyone involved. But most importantly, we hope the film will help people to see that together is the only way that we can defeat dementia in Down’s syndrome!

    Current research

    Any research that we support is carefully considered and reviewed and has to be ethically approved. The projects listed below have been through this process and are looking for participants.

    Research reports

    A systematic review of Unexplained Early Regression in adolescents and adults with Down’s syndrome

    In 2018, at the 13th World Down Syndrome Congress, a group of medical professional and representatives from the Down’s syndrome community from around the world took the opportunity to discuss Unexplained Early Regression in adolescents and adults who have Down’s syndrome.

    Although affecting only a very small proportion of the population of people who have Down’s syndrome around the world, it has been recognised by clinicians and it’s clear that more research is needed to understand Unexplained Early Regression more fully.

    As a first step, the DSA was able to fund a systematic review of all the published research. We are also pleased to share the findings of an additional research study that was published a little earlier this summer.

    Both of these articles are available by clicking on the buttons below.

    Madeleine Walpert, Shahid Zaman and Anthony Holland

    Benjamin Handen 1,*, Isabel Clare 2, Charles Laymon, Melissa Petersen, Shahid Zaman, Sid O’Bryant, Davneet Minhas, Dana Tudorascu, Stephanie Brown and Bradley Christian 4 on behalf of the Alzheimer’s Biomarker Consortium-Down Syndrome (ABC-DS)

    We are delighted to announce that the DSA is funding a brand new research project into the cause, recognition and possible treatment of Unexplained Early Regression. The team at the Cambridge Intellectual and Developmental Disabilities Research Group will start the research in Spring 2022 and we will be calling for participants through our usual channels.

    If you know someone with Down’s syndrome who is experiencing, or has recovered from, this type of regression, we would be pleased to hear from you. Please email info@downs-syndrome.org.uk

    International cardiac guidelines project

    Initiated by Down Syndrome International, the systematic review and subsequent development of a consensus document (Cardiovascular Complications of Down Syndrome: Scoping Review and Expert Consensus, published in January 2023), has been carried out by clinical experts at the Brompton and other centres in the UK together with experts around the world. The results of this work will help professionals to better understand, diagnose, manage and care for people with Down’s syndrome who have cardiac disease.

    The guidance highlights best practice which will lead to better outcomes for people who have Down’s syndrome. The Down’s Syndrome Association is delighted to have been part of this ground-breaking project which will almost certainly save lives.

    Father’s experiences of parenting a young adult with Down’s syndrome

    This research was carried out by Becky Piclet (Trainee ClinicalPsychologist) at The University of Leeds, and supervised by DrTracey Smith and Dr Tom Cliffe.

    The lived experiences of new mothers accessingfeeding support for infants with Down syndromeduring the COVID-19 pandemic

    Parents of infants with Down syndrome may require more support with feeding than parents of typically developing infants and high quality feeding support is important for maternal wellbeing. Throughout the pandemic, many feeding support services were offered virtually rather than face to face. Recent research suggests that virtual feeding support offered during the pandemic has impacted mothers’ feeding experiences negatively.

    Studies conducted before the pandemic suggested that feeding support for mothers of infants with Down syndrome was already insufficient. As such, we were interested in finding out how changes to feeding supportservices as a result of COVID-19 have affected mothers of infants with Down syndrome and wanted to explore their personal feeding experiences in rich detail.

    Thirteen mothers of infants with Down syndrome who gave birth shortly before or during the pandemic took part in semi-structured interviews.

    Stay Calm Project
    Establishing the transdiagnostic contextual pathways of emotional outbursts

    We are pleased to be able to share details of the findings of this study that was supported by the DSA.

    The research team have used their findings to create a parent guide on emotional outbursts or meltdowns for Cerebra, a UK charity supporting children with brain conditions.

    If you have any questions about this research, you can email kwrg@contacts.bham.ac.uk.

    Report: a European survey exploring the information and support needs of parents of children with congenital anomalies.

    Report: Eye care in people with Down’s syndrome: understanding the provision and the impact of COVID-19

    Report: Investigating eye shape and its effect on focusing in Down’s syndrome

    Incidence of fractures in people with intellectual disabilities over the life course: a retrospective matched cohort study

    Making hearing tests easier for people who have Down’s syndrome

    The lived experiences of parent carers of children with learning disabilities attending mainstream education

    Spatial abilities in Down syndrome: characterising the profile of spatial skills and models of spatial development

    Media, Communications, and people with learning disabilities and autism

    Stand by Me research report

    Experiences of couples with a learning disability when one partner has dementia

    Click here to visit the Stand By Me project page.

    Quality of EHC Plan Outcomes for Primary Students with Down Syndrome

    Parenting children with Down syndrome: positive approaches to supporting development

    Using the Power Threat Meaning Framework to make sense of experiences parenting a child diagnosed with a learning disability

    Virus Watch Study – Latest Findings

    Multiple morbidity across the lifespan in people with Down syndrome or intellectual disabilities: a population-based cohort study using electronic health records

    Impact of prescribed exercise on the physical and cognitive health of adults with Down syndrome: the MinDSets study

    The Impact of Down syndrome on
    Parents and Neurotypical Siblings