In 10 minutes, help researchers better understand Kabuki syndrome and have your medical records in one place.
The medical records of people with Kabuki syndrome can reveal the natural history of this rare disease. Natural history describes the expected symptoms from birth to end of life. With this knowledge, we can create a roadmap of what to expect and find the best way to treat the life-altering symptoms of Kabuki syndrome.
Ciitizen is a digital platform that has developed a new method to make natural history studies easier. Ciitizen is part of the leading genetic testing firm, Invitae. This next generation study for Kabuki syndrome is expected to facilitate:
- Informing clinical researchers how a disease changes over time
- The connection between mutation types and symptoms to facilitate targeted therapies
- Enabling better outcome measure selection for use in clinical trials
- Speeding up the time to get therapeutics to patients and
- The use of data as a placebo (instead of actual patients) in a clinical trial.
Become a “Kabuki syndrome Ciitizen” in less than 10 minutes. The person completing the form will be asked to upload a government-issued ID and the birth certificate of the person with Kabuki syndrome. When filling out the form, you can save your progress and return to complete these final steps!
At this time, Ciitizen is only open to patients receiving care in the United States. Ciitizen is planning to expand to additional countries in the near future, and we look forward to keeping our global community updated.