“Science does not know its debt to imagination.” — Ralph Waldo Emerson
If you are an investigator interested in obtaining patient data, contact us or check back soon to access our simple Data Use Agreement.
The International Patient Registry is an invaluable tool for researchers who are interested in conducting observational studies about children and adults with PANS in the United States and Canada.
Researchers who wish to request patient-reported data for observational studies can complete a simple Data Use Agreement. The agreement will include:
- Signed confidentiality agreement
- Research proposal
- IRB approval (or explanation of project)
- List of requested variables for query
The registry committee is interested in any and all areas of study to broaden our understanding of PANS.
Priority topics include:
- Innate Immune Dysfunction
- Microbiome and it’s role in PANS
- Impact of treatments/therapies
- Environmental Toxicology
- Maternal Immune Status
The formal application guidance document indicates the format of the applications, regulatory requirements, and other responsibilities for individuals receiving Registry data. Please note that we require the involvement of registry investigators when reviewing applications. In addition, patients and their families have given consent on what categories of research they would like to be involved in. Some data will be omitted for those who choose strict sharing options.
Requests for patient data undergo a thorough review for scientific merit to ensure that the information needed for the study is available within the Registry and that the proposed study design and analyses will yield valid results.
Meeting these requirements allows the IPR committee to maintain our obligation and commitment to protecting the privacy of people with PANS who allow their information to be included in the Registry. This information is protected by the Health Insurance Portability and Accountability Act (HIPAA) and the informed consent that was signed by every Registry participant or their legal guardian. The registry sponsor (PRAI) is entrusted with this personal health information and is responsible for keeping that information private and secure. For this reason, we have a standard set of criteria that must be met by all individuals requesting to use de-identified Registry data.
If the application is approved, data are securely delivered to the researcher after all regulatory and legal requirements are met.
Study investigators are required to submit annual progress reports and are encouraged to present their findings to the larger PANS community and through dissemination in peer-reviewed journals.
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