Patient advocacy
is in our DNA.
Drive treatments and better care for your patient community by making patient data available to doctors and researchers.
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Natural history studies are critical to advance understanding of your disease. We collect, organize and harmonize clinical data from patient medical records to deliver a cost-effective natural history dataset without burdening patients with clinic visits.
How it works
Onboard your patient community
Citizen collects and normalizes consented clinical data from unstructured patient medical records
Researchers can easily access your natural history dataset
Share community
Leverage patient-consented natural history data to get answers to questions that matter to patients and families.
See the case study
Build natural history studies
Create longitudinal studies that show burden of disease, progression of patient symptoms and genotype/phenotype correlations.
See the research
What our partners are saying
Accelerating drug development
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.
Stacie Lindsey
Founder & CEO
Cholangiocarcinoma Foundation
Detailed and
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.
Monica Coenraads
Co-founder and CEO
Rett Syndrome Research Trust
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.
Shelley Frappier
Director, Patient Engagement & Data
Cute Syndrome Foundation
There's a genuine commitment there to what we're all looking for, which is to make silly problems like carting medical records go away and get to real problems like understanding disease so we can make medicines.
Michael Graglia
Co-founder and Managing Director
Syngap Research Fund
Participate from
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.
Melissa Hioco
Director, Community Engagement
STXBP1 Foundation
and relevant
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.
Justin West
Co-founder & President
KCNT1 Epilepsy Foundation
Enables important publications
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.
Kim Nye
Founder & President
Tess Research Foundation
Our advocacy partners
Connecting patients,
accelerating cures.
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