Patient advocacy is in our DNA.

Partnering with Citizen Health to host the International Cholangiocarcinoma Patient Registry is a transformative step in accelerating drug development and improving patient outcomes. This community-driven research impacts the pace of scientific breakthroughs and empowers patients to participate in improving treatments now and in the future.

Citizen continues to be a key partner in our drug development program. TESS Research Foundation coauthored multiple publications in peer reviewed journals using patient data gathered through the Citizen platform. These publications help capture what SLC13A5 Epilepsy looks like over time— a key baseline to compare the effectiveness of new therapeutics.

Our community has participated in multi-year, in-person Natural History Studies which take a toll on our patient population and their families. In six months, Citizen was able to create a natural history dataset that spanned over 15 years without patients ever having to leave their homes. An analysis of the data suggests that the Citizen natural history dataset has detailed a reliable disease progression, represents a wider range of individuals than in-person studies, and can benchmark comparisons in development and function to gene therapies and other disease-modifying treatments at regulatory standards.

Citizen is uniquely positioned to generate natural histories for rare disease communities at a fraction of the cost and time commitment from parents who are already overburdened. The pharma industry recognizes the importance and relevance of Citizen's work as demonstrated by the fact that five of our partners are currently accessing and leveraging our data in preparation for future IND submission.

Our community has seen immense and direct benefits from using the Ciitizen platform. Our industry partners have been able to use the robust data from the platform to successfully launch a clinical trial.

So our community, of course, wants to participate in research in any way they can. And the fact that they're able to do it from their own home, the fact that they don't have to travel anywhere, I think it makes it so user-friendly and accessible for our families.