Down Syndrome Databank

Summary

A large database of information about people with Down syndrome could offer many benefits for the research communities investigating the associated developmental difficulties and health issues, as well as those studying the genetics and wider issues concerning language development.

Clearly there are privacy issues and such a database should shield individual identity from researchers except when absolutely necessary and where informed consent has been obtained.

However, pooling researcher-observed measures from multiple studies could provide larger, aggregate data sets on a range of standardised measures.

Accompanying the data collected through Down Syndrome Records Online, this would be an important resource for researchers and practitioners.

This project will develop an online interface to aggregate data sets collected through Down Syndrome Records Online and through voluntary submissions from researchers.

Further information

This page is under development. Further details will be added shortly.