RARE-X Study for CHD2

RARE-X

Participating in a data collection program is one of the most important things that families with a child with CHD2-related neurodevelopmental disorders can do.

Having a robust database will allow CCC to generate more interest from clinicians, researchers and drug developers that we need, in order to help discover a treatment specific for CHD2-related disorders.

To Register your loved one, please go to: https://chd2.rare-x.org/

RARE-X Why Infographic

RARE-X What Infographic

RARE-X Photo of Kids

Have you or your loved one been diagnosed with CHD2?

CHD2 Data Results through 12/30/22

155 CHD2 patients enrolled worldwide

RARE-X Results through 9/9/2022

Are you one of the 79 people who haven't consented yet on the upgraded RARE-X platform? Email support@rare-x.org if you have questions.

Ongoing Studies

RARE-X Study

Participating in a data collection program is one of the most important things that families with a child with CHD2-related neurodevelopmental disorders can do.

CHD2 In Adults

This study aims to understand seizures, communication and daily living of adults with CHD2 mutations.

Citizen Health

Natural History Studies (NHS) are critical to the drug development process. Citizen Health has developed a new method to make this process easier.

Simons Searchlight

By joining our community and sharing your experiences, you contribute to a growing database used by scientists worldwide to advance the understanding of CHD2.