What is a Natural History Study?

A Natural History Study follows a group of patients over time to collect information about their symptoms and better understand the disease. Our natural history studies cover different data types, complementing each other to create a comprehensive understanding of how the disease affects each individual diagnosed with CTNNB1 Syndrome. Data is collected in multiple ways, including surveys, clinical assessments, and the review of past medical records. We are proud to partner with teams of leaders in the field who are working diligently to uncover the necessary details of CTNNB1 Syndrome across our patient population. 

How Can I Participate?

Your participation is essential for developing better care guidelines and progressing the development of treatments, including the ability to run clinical trials. We encourage all CTNNB1 patients to participate in the following:

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  • Online surveys
  • Clinical phone interview
  • Optional blood sample collection
  • In-person assessments
  • Optional blood sample collection

To join, please contact Lauren Cochran at lauren@curectnnb1.org.

  • One-time sign up to allow access to existing medical records
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  • Blood sample collection

To join, please contact Emily Amerson at emily@curectnnb1.org.

  • Clinical phone interviews
  • Online questionnaires
  • Photos
  • Virtual assessments
  • Blood sample collection

To join, please contact the study coordinator, Conor Miles at conormgm@uw.edu or 206-685-8770.

  • Online questionnaires
  • Interviews
  • Participants receive up to $100 for sharing data