Down Syndrome Online
The Trust publishes a large quantity of information online and this
amount will
increase dramatically in the coming years. Navigating the
range of services and information sources needs to be
intuitive and straightforward.
Down Syndrome Online (http://www.down-syndrome.org) will form
the central location for leading people quickly and simply to
the right resource when they need it.
There is an ever-increasing range of information and advice published on
the Internet about Down syndrome. However, much of this information is
inaccurate, unreliable, misleading, out of date and not backed by
credible scientific evidence.
This project will meet the need for freely-available,
reliable, up-to-date, evidence-based online information and advice about
the education and development of individuals Down syndrome, provided by
a reputable organisation with a recognised track record in research.
Down Syndrome Online will be a strongly-branded, central portal
for current and evidnce-based information and services about Down syndrome.
The quality of the information the Trust already provides on its web
site meets the high standards for online medical resources expected by
the international Health On the Net Foundation (see
http://www.hon.ch/ for more details),
recognised by HONCode accreditation of the Trust’s main web site.
The Down Syndrome Online website (http://www.down-syndrome.org)
will be separate from The Down Syndrome Educational Trust's main site (http://www.downsed.org) about its work and
fundraising, and separate from the charity’s online shop site
(http://shop.downsed.org).
The
information and advice provided on the Down Syndrome Online
website will be reliable, accurate
and up-to-date. It will be based on evidence gathered from the Trust’s
own scientific research, studies undertaken by other leading experts
around the world, and the Trust’s extensive hands-on experience of
working with individuals with Down syndrome and their families for more
than two decades.
The Trust is currently improving the content, structure and navigation
of the Down Syndrome Online web site, in order to make the
content more readily accessible and more usable for its diverse and
worldwide audience of parents, professionals and researchers.
It is also moving to an ‘open access’ online publishing model to reach
the greatest number of beneficiaries. The majority of content at
Down Syndrome Online will be published under an ‘open access’
licence that will permit individuals and organisations to freely copy
and re-distribute the information as long as the author and original
source are appropriately acknowledged, that no derivative works are
created and that it is not used for commercial purposes. For example,
this will enable parents to make copies of online articles to give to
schools or will enable other Down syndrome organisations to reprint our
articles in their newsletters and publications.
Alongside this freely accessible online information, the web site will
also provide a comprehensive range of topic summaries, activities and
resources to enable parents and professionals to promote the development
and education of children with Down syndrome.
Although it does not directly contribute to the Trust's research
activities, this project supports these activities by providing a
cost-effective platform to disseminate practical research findings
worldwide.
- Provision of reliable, up-to-date and accurate information and
advice about Down syndrome to tens of hundreds of thousands of families, professionals
and researchers worldwide, available on demand.
This project is ongoing.
Funding
The Trust is seeking funding to maintain and expand the
information and services provided through Down Syndrome Online.
If you would like to support this work, please
make a
donation online or contact giving@downsed.org.
The Vodafone UK Foundation has provided funding towards the capital costs
of web servers.