Accelerate Rare Disease Research with Citizen Health
Access comprehensive, research-ready real-world data to power critical rare disease studies
and advance treatment development.
Access DataBecome a Research Partner

Real-World Data That Drives
Research Forward

Citizen Health is a Real World Data Platform that creates FDA-grade, research-ready datasets from unstructured medical data.

We work with leading researchers and academic medical centers to generate and provide rich RWD to power critical rare disease research.
12k+
Patients
on Citizen
120+
Unique rare conditions
with data
100+
Advocacy, Industry
& research partners
30+
Abstracts &
manuscripts

Access Citizen Data

Citizen provides no-cost core natural history dataset modules and upgraded longitudinal datasets for academic institutions to support your rare disease research efforts.

Accessing Citizen Data requires a short application, agreement to our research terms and submission of our security questionnaire. Get started by clicking on a data module below or contact us for more information.

Our Data Offerings

Data icon

Core NHS Dataset

Data Contents
  • Year of birth
  • Zip-3
  • Genetics
  • Symptoms (unique)
  • Gender
  • Self-reported diagnosis
  • Conditions (unique)
  • Medications (unique)


Data Access:
No cost access
Learn More
    Data icon

    Extended NHS Dataset

    • Conditions (longitudinal)
    • Medications (longitudinal)
    • Hospitalizations
    • Development
    • Seizure history
    • Laboratory studies
    • Symptoms (longitudinal)
    • Procedures
    • Growth parameters
    • Standardized tests
    • Physical exam findings
    Data Access:
    Fee based access
      Learn More
      Data icon

      Data Additions

      Data Contents
      • EEG tracings
      • MRIs
      • Data refreshes
      • Custom variables





      Data Access:
      Fee based access
      Learn More

      Academic Research Partnership

      Refer Patients, Power Research

      Join our patient referral program to support essential digital natural history studies and low/no cost access opportunities to our otherwise fee based longitudinal datasets.
      People Icon

      Refer Eligible Patients

      Providers and Genetic Counselors can identify patients in eligible cohorts to join Citizen Health. Patients can create a profile in five minutes.
      Medical Record Icon

      Optimize Your Workflows

      Patients can share their comprehensive medical history with you prior to their visits so you can focus your time with them on the topics that matter most.
      An icon depicting science

      Access Data and Drive Research

      Referring patients helps build essential digital natural history studies, supporting research that could lead to real treatments and help produce datasets for your research and low/no cost access options.
      Learn More About Our Partnership

      Academic Research Partnership FAQs

      Publications

      Lessons from Henrietta Lacks inform a transparency framework to catalyze generative artificial intelligence in medicine
      Article
      2025
      Deciphering the Natural History of SCN8A-Related Disorders
      Article
      2025
      Clinical signatures of SYNGAP1-related disorders through data integration
      Article
      2025
      Autism gene variants disrupt enteric neuronmigration and cause gastrointestinaldysmotility
      Article
      2025
      Increasing Clinical Trial Participation of Black Women Diagnosed with Breast Cancer
      Manuscript
      2024
      Patient characteristics, treatment patterns, and outcomes in patients with cholangiocarcinoma
      Research Poster
      2024
      Comprehensive phenotypes of patients with SYNGAP1-related disorder reveals high rates of epilepsy and autism
      Manuscript
      2024
      Autism gene variants disrupt enteric neuron migration and cause gastrointestinal dysmotility
      Manuscript
      2024
      Validation and clinical discovery demonstration of breast cancer data from a real-world data extraction platform
      Manuscript
      2024
      SYNGAP1-related disorder genotype-phenotype analysis through a digital registry
      Research Poster
      2023
      A novel patient-centric longitudinal data registry platform generates insights into real-world cholangiocarcinoma (CCA) clinical practice
      Research Poster
      2023
      A Novel Relationship between Interictal Epileptiform Discharge Burden and Gross Motor Developmental Delay in SCN2A Developmental and Epileptic Encephalopathy
      Research Poster
      2023
      Characterizing a rare neurogenetic disease, SLC13A5 citrate transporter disorder, utilizing clinical data in a cloud-based medical record collection system
      Manuscript
      2023
      Delineating clinical and developmental outcomes in STXBP1-related disorders
      Manuscript
      2023
      Expanding the phenotype of CHD2-related disorders through 97,010 phenotypic annotations
      Research Poster
      2023
      Comparing phenotypes across five developmental and epileptic encephalopathies (DEEs) through evaluation of 2490 patient data years.
      Research Poster
      2022

      Advocacy Group Partnership

      Growing Partner Ecosystem

      PAG logos
      Collection of Logos from Patient Advocacy Groups and Partners with Citizen Health
      Connecting patients,
      accelerating cures.
      AdvocacyResearchNewsAboutPublicationsCareersFAQLinkedInGet started