Frequently Asked Questions
Have questions regarding our recent announcement with Invitae? Visit our announcement page here.
Q: Who is eligible for the Ciitizen service?
A: Today, Ciitizen is available for children and adults living with a rare disorder, including genetic neurodevelopmental disorders, inherited cardiomyopathies and arrhythmias, and rare cancers. We will continue to expand support for additional conditions in the coming months.
Q: Why is it so important to have your health information?
A: When you have access to your health information, you have the power to seek additional treatment options, to find potential clinical trials, and to share your information for research. When it resides only with your medical providers, you are dependent on them to keep it (and most providers do not keep records for more than 10 years); you’re also dependent on them to send it where you need it to go. By law, health care providers are required to give you copies of your health records – but they are not always required to do this immediately (they can take up to 30 days or more in some cases), and in some cases they can charge you a fee to do so. Our team takes on the burden of record collection for you, helping you have your health information to help you be more informed and more prepared, and allow you to participate in research to help others.
Q: Why was Ciitizen formed?
A: Ciitizen’s story began in 2018 when founders Anil Sethi and Farid Vij were driven to improve the lives of patients after the loss of Anil’s younger sister to metastatic breast cancer. Despite receiving excellent care, her medical records were severely fragmented across many hospitals, handicapping her doctors in providing the best possible treatment due to limited information.
By establishing direct relationships with patients, Ciitizen began collating health records spanning a patient’s lifetime. These records were then organized and integrated into the Ciitizen platform, giving rise to detailed patient and disease profiles. Patients were able to share any of their information with doctors and family members for better care, and give consent for their de-identified information to be shared with researchers developing new treatments.
In 2019, cofounder Nasha Fitter worked with the team to expand the platform from cancer to all patients living with rare and complex diseases. Through running a patient advocacy group for her own daughter’s rare neurological disorder, Nasha understood that the rarer a disease, the more critical it was to collect rich clinical data for improved drug development. Additionally, by integrating the wealth of insights that individual patient communities bring, Ciitizen is further evolving its approach to provide needed personalized information and support to all patients with similar conditions.
After two years under the umbrella of Invitae, Ciitizen is now forging its path as an independent company once again. The vision remains unwavering—a future where every patient, regardless of the stage or nature of their condition, has immediate access to the best guidance and personalized care options available at that precise point in time.