Ciitizen / Invitae

Next Generation Digital Natural History Study

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What is a Natural History Study and Why Do they Matter?

Natural History Studies (NHS) are critical to the drug development process. Ciitizen has developed a new method to make this process easier. A next generation, digital NHS for CHD2-related disorders is expected to facilitate:

  • Informing clinical researchers how a disease changes over time
  • Enabling better endpoint selection to use in clinical trials
  • Understanding the connection between mutation types and symptoms
  • Reducing the time it takes to study new medicines in clinical trials
  • Speeding up the time to get therapeutics to patients
  • Using data as a placebo (instead of actual patients) in a clinical trial

How it Works

  • Participation is completely digital - No clinic visits required
  • Collects participant's medical records from the institutions visited
  • Data from medical records is organized and summarized, free of charge to the participant
  • Participants retain full control of their health records
  • With your consent, clinicians, researchers and biopharma can access anonymized data to aid in research
  • Available now in the US with plans for worldwide availability
  • Registering with Ciitizen requires less than 10 minutes of your time

More Info:

Ongoing Studies

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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.

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CHD2 In Adults

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

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Ciitizen/Invitae

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

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Videos