DATA COLLECTION

In 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 containing the medical records and other health information of CHD2 patients all over the world.

CCC has partnered with RARE-X to create the first CHD2 data collection program ever of its kind, and we want to try to capture every possible person who is affected by CHD2. Our goal is to get every CHD2 family in the US, and around the world, to participate in this data collection program because the more participation there is in the program, the more our entire CHD2 community will benefit.

 

Our partnership with RARE-X will:  

  •  Make it easy for our families to upload their medical information

  • Guarantee that the information remains 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 de-identified information collected in a secure database.

  • Give patients the opportunity to participate in clinical trials 

  • Reduce the time it takes to study and get new medicines to patients 

  • Enable the use of data as a placebo (instead of actual patients) in a clinical trial