Your privacy is important to us
The Living Rare Study is hosted on NORD’s IAMRARE® platform, which:
- Is designed for patient-powered research studies.
- Achieved and maintains Health Insurance Portability and Accountability Act (HIPAA) compliance, meaning that NORD adheres to national standards to protect patient information from being disclosed without a patient’s consent or knowledge.
- Uses best practices for data security and protection.
NORD will not share any information publicly that could identify individual participants. All data, including those with Personal Health Information (PHI), will be stored in a password protected secure server. Access to PHI will be limited to:
- Approved members of the Living Rare Study team.
- NORD staff, in cases where technical support is needed and with the permission of Study staff.
- In all cases, your privacy will be protected. The Study Advisory Board will evaluate all requests for data from researchers. Researchers will only be provided with the minimum data necessary to accomplish their research study goals. Data containing PHI will only be shared if the research cannot be done without it. The researchers will be required to sign a Confidentiality Agreement in which they promise to keep your information safe.