Research – Hope for the Future
“A number of researchers and pharmaceutical companies are either currently working on, or are considering working on or investing in, the development of drugs or precision therapies that may improve the lives of those living with CHD2, or that may even lead to a cure for this disorder.” (Coalition to Cure CHD2 website).
The website Coalition to Cure CHD2 suggest ways that you can get involved in order to help them achieve this goal and improve the future of your child with CHD2.
Please visit https://www.curechd2.org/get-involved
Why it is important to take part in research studies
It is extremely important to take part in research studies in order to assist researchers and pharmaceutical companies in developing and trialling new treatments and approaches to CHD2, it is important that they are able to understand how many individuals have the condition and the ways in which it manifests. Therefore it is extremely important that individuals with CHD are registered on current data collection programmes. A number of these are listed below.
Natural history studies that you should participate in:
RARE X Natural History Study https://www.curechd2.org/rare-x
Ciitizen Digital Natural History Study https://www.curechd2.org/ciitizen
Adults with CHD2 (University of Toronto) https://www.curechd2.org/adultswithchd2
Tiger Study (University of Washington) https://www.curechd2.org/tiger-study