In the US, the National Institute of Health (NIH) has just granted additional funding to the tune of 22.2 million dollars to boost research into Down syndrome, linking basic and clinical research. This investment is part of the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down SyndromE) project launched in June 2018 in response to a Congressional directive. The aim of this project is to study health problems and quality of life in individuals with Down syndrome.
Overall, approximately 59 million dollars will be allocated for research into this condition by the NIH during the 2018 financial year. Additional support is also earmarked for the 2019 financial year but is currently pending the availability of funds.
NIH Director Francis S. Collins explained, “We have a unique opportunity to improve health outcomes for those with Down syndrome by increasing their inclusion in research”. “People with Down syndrome are at risk of many of the same conditions as the general public such as Alzheimer’s disease, sleep apnoea, heart disease, and autism. It is my hope that this effort will provide meaningful insights to find treatments that benefit all”.
The INCLUDE research strategy stands out in that it is attempting to improve the health of individuals carrying an additional chromosome whilst, at the same time, investigating risk and resilience factors for common conditions shared with those who do not have Down syndrome. Projects granted additional funding have been classified according to three main areas of research:
- To conduct basic targeted studies,
- To create an extensive study population to fully identify health characteristics at various developmental stages and investigate co-existing conditions,
- Finally, to establish a network of clinical trials to test treatments for concomitant disorders in individuals with Down syndrome and extend the existing clinical trial infrastructure to focus on people with Down syndrome.