RARE-X Data Access

RARE-X works with patient advocacy groups and research institutions worldwide to collect and share high-quality rare disease patient data.

• Data Privacy: All data is de-identified in accordance with established privacy standards to protect participant confidentiality.
• Data Structure: Data is structured at the individual patient level to facilitate quantitative analysis.
• Data Sharing and Research Utility: Secure data sharing opens new opportunities for collaboration, discovery, and faster progress in understanding and treating rare conditions.

Our vetted data governance practices ensure compliance with country-specific regulations for patient privacy, data transfer, and data use. This allows researchers and analysts to spend more time exploring data — and less time managing compliance.

Types of Data Access

RARE-X provides researchers, data scientists, and patient advocacy groups access to rare disease patient data in 3 ways:

LEVEL 1: Aggregate Patient Data –Templated data visualizations based on aggregate patient data are available upon request and can be used for presentations, conferences, abstracts, and other purposes. Templated data visualizations are typically completed in less than 60 days. Custom data visualizations based on aggregate data can also be requested; however our ability to fulfill such requests depends on the complexity of the request and current demand. Custom requests will be reviewed by the Data Access Committee on a case by case basis, and an estimated completion time will be communicated once the scope of the request has been sufficiently assessed.  Aggregate patient data requests are available to patient advocacy groups that are participating in the data collection platform. CITI training is required in order to access this data. 

Our current Templated Data Visualization Requests include:

• Enrollment and Demographics
  • Total number of enrolled participants 
  • Number of new enrollees over time e.g., by month or quarter 
  • Geographic distribution of participants e.g., by country, state, or region
  • Demographic breakdown of participants e.g., age, gender, race/ethnicity, caregiver status
• Survey completion metrics
  • Percentage of assigned surveys that have been completed 
  • Total number of assigned and completed surveys for a patient population
• Genetic report status
  • Number of curatable genetic test reports uploaded
  • Number of non-curatable genetic test reports
  • Number of curatable reports submitted in an unsupported language
• Aggregate breakdown of all responses in the Head to Toe Survey
  • Includes breakdown for body systems affected from the Head to Toe Survey
• Top five Level 2 survey responses
  • Symptoms reported within top five domains and percentage of respondents affected
  • Corresponding age ranges for when symptoms first appeared and for when symptoms were first diagnosed
    
    *All other aggregate data requests will be considered custom data requests. We anticipate increasing the number of templated data visualization options available to our partners over time. Check back for updates! 
    * Aggregate visualization request cannot be completed for less than three patients
    * Updated visualization requests from the same requester will only be fulfilled once there are at least five new respondents compared to the requester’s last request.
    
    LEVEL 2: De-identified, Patient-level Data – De-identified patient-level data is available for researchers to use in their own statistical analysis, including for pre-clinical explorations, publications, presentations, or grant preparations. Professionals, patient advocates, researchers, and students working under a research project may apply for level 2 access using the form below.  All Level 2 applications will be reviewed by the Data Access Committee. If approved, applicants must sign a Data Use Agreement before access is granted.The entire process for gaining access to Level 2 data takes from 1-8 months depending on many factors. Level 2 data requests can be submitted by researchers, clinicians, biopharmaceutical companies and patient advocacy groups. 
    
    LEVEL 3: Clinical Trial and Natural History Data – RARE-X helps identify and, in some cases, recruit patients for clinical trials and other research studies. In addition, the data analytics platform supports multiple natural history studies by enabling patients to remotely complete Patient Reported Outcome (PRO) measures required for these studies. Please contact [email protected] with questions about clinical study recruitment.
    
    If you have questions about the different kinds of data requests or the data request process, please contact our Data Access Committee at [email protected].

Click here to start your data request!