Development in context
Longitudinal study of influences on early development
This research study will be the largest longitudinal study of early development
for children with Down syndrome. The large number of children and the duration of
the study are necessary to examine factors influencing variability including the
consequences of hearing loss, the emergence of additional difficulties such as autism
spectrum disorders, and the long-term outcomes from early interventions.
Many factors influence childhood development. Among children with Down syndrome,
outcomes are variable and the reasons for this variability are not understood. Outcomes
may be influenced by many factors including individual genotype, health problems, additional disabling
conditions, family environment and parenting skills, early intervention and educational
opportunities.
A detailed longitudinal study of around 200 infants and young children
from the first year of life to 4 years of age is required
to investigate all aspects of early development, including health, motor, communication,
social-emotional, cognitive and language development. The children's
progress will be monitored with a range of standardised assessments
and hearing tests administered regularly. Families participating
will be supported to engage in a common early intervention programme of home-centred
activities and encouraged to maintain their own records utilising the UK Early Support
Developmental Journal and the Trust’s early language progress record sheets.
The impact of high incidence hearing loss on spoken language development among children
with Down syndrome has not been studied prospectively with a longitudinal sample.
This study would also investigate the impact of treatments for hearing loss.
This detailed study will also complement wider online data collection plans by offering
a ‘control’ group for comparison with family-reported data provided online.
Investigators
Partners and advisors
Location
Study results will be published in peer-reviewed scientific publications. Practice
implications will be published in periodicals for families and professionals, including
Down Syndrome Research and Practice
and incorporated into freely available Down Syndrome Topics
advice and information summaries and Down Syndrome Issues
and Information books. Open Access articles and summaries will be provided
for reproduction in the newsletters and journals of associations, support groups
and professional societies. The study results will also be shared
through the Trust's training courses and its contributions to
conferences in the UK and worldwide.
- Identification of key factors influencing developmental outcomes for infants and
young children and the ways in which these factors interact
- Improved understanding of the impact of hearing loss on development and evidence
to inform decisions about medical treatments
- Improved understanding of early indicators of additional needs,
including autism
spectrum disorders and behavioural difficulties
- Improved understanding of the interrelationships between signing, and speech and
language development
- Practical recommendations for individualised early intervention programmes for children
with Down syndrome
- Practical recommendations for the early identification of additional difficulties
emerging in young children with Down syndrome
We are seeking funds for this project.
If you would like to support this work, please visit our giving site for details
of how you can help or contact giving@downsed.org.