Down Syndrome Records
Through this project, the Trust will develop systems to collect
information from families, teachers, therapists and researchers over the
Internet.
Answering fundamental questions about individual
variability, rates of progress and the profile of development for people with Down syndrome
requires larger data sets than have previously been collected.
Observing the consequences of
changing environments requires more frequent and widespread data collection.
The economics
of data collection on these scales requires new methodologies in data collection and
analysis.
Widespread access to the Internet and the opportunities for secure, interactive
and dispersed data collection offer solutions to this challenge. Increasing numbers of
researchers are conducting studies in a variety of areas of cognitive psychology utilising
the Internet to communicate with participants.
Although there
are potential methodological concerns about online data collection, they can be mitigated
and large sample sizes increase the power of statistical tests.
Studies of individuals with Down syndrome to date have generally been small in size
and have also been subject to possible sample bias and other methodological difficulties.
The Down Syndrome Educational Trust has therefore begun development of systems to collect
information from families, teachers, therapists and researchers over the Internet.
This
project will continue to develop and implement online data collection systems. The initial
phase of the project will deliver surveys and progress records data capture through a secure
web site that parents can register to use and volunteer data.
Subsequent developments will include:
- Extending the system to accept data
collected by teachers, therapists and researchers.
- Mechanisms for offering aggregate
data and query facilities to research partners online.
- Software that can be used by
people with Down syndrome to measure responses to questions and activities. This software
will be able to deliver interventions (for example, literacy training and fine motor skills
practice) as well as measure achievements.
- Developing systems utilising 'voice over IP' and video conferencing technologies to support interviews and video observation.
These systems will offer parents a single online store of data about
their child, moving away from multiple copies of paper-based records.
Over a period of time, the database will be able to provide an overview
of that child's progress and their areas of relative strength and
weakness.
The data collection systems
will be linked to appropriate sources of advice and guidance relating to the information
recorded.
Staffing
Having completed detailed planning and some initial development work,
the Trust is currently seeking funding to undertake work on the first
phase of the project.
Funding
The Trust is currently seeking funding for this project.
If you would like to support this work, please
make a
donation online or contact giving@downsed.org.