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/
Have you or your loved one been diagnosed with CHD2?
Register here
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
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.
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This study aims to understand seizures, communication and daily living of adults with CHD2 mutations.
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Natural History Studies (NHS) are critical to the drug development process. Citizen Health has developed a new method to make this process easier.
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