In anticipation of our full registry for our disease, we want to take the first step in making sure we've captured every possible person who is affected by CHD2 and where they are located.
Ultra-rare disease, it is often difficult to justify developing a new medication for just a handful of children and even more so if you don’t understand the disease.
In order for drug developers and researchers to identify patients eligible for either new drugs or repurposed drugs specific to CHD2, it will be imperative to create a database of CHD2 patients all over the world.
Participating in a patient registry is one of the most important things that families with a child with CHD2- related neurodevelopmental disorders can do.
Our goal for our patient registry is to get every CHD2 family in the US, and around the world, to sign up and share their child’s medical information.
Having a robust patient registry will allow CCC to generate more interest from the clinicians, researchers and drug developers that we need to help discover a treatment specific for CHD2-related disorders.
Coalition to Cure CHD2 is currently investigating organizations that can:
Make it easy for our families to upload their medical information
Guarantee that the information remain confidential and that the handling, storage and use of that information complies with all applicable privacy laws
Enable researchers and other relevant third-party organizations to gain access to the information upon CCC’s prior written approval to assist them in finding new treatments and/or a cure for CHD2.
Coalition to Cure CHD2 expects to make a decision in the first quarter of 2021.