Rare Disease Data Repository
Are you a rare disease organization or researcher with valuable research study datasets or protocols to share? Let us help you to store, organize, and share your rare disease data, unlocking a world of possibilities for research and collaboration!
The Rare Disease Data Repository (RDDR) is an invaluable resource dedicated to the storage, organization, and dissemination of research data pertaining to rare diseases. Catering to researchers and rare disease organizations, the RDDR offers access to rare disease datasets that include natural history studies, clinical trial readiness studies, study findings, protocol documents, etc. Our goal is to accelerate the discovery of new treatments and enhance the understanding of rare diseases by providing a centralized platform for data sharing and collaboration. The RDDR is committed to maintaining the highest standards of data accuracy, privacy, and security, ensuring that all information is managed with the utmost care and integrity. By fostering a collaborative environment, we aim to empower the global rare disease community and drive advancements in diagnosis, treatment, and ultimately, cures.If you are a rare disease organization or academic researcher, please click HERE to request an account. Once you're registered on RDDR, you may upload your research datasets or request access to datasets from research studies.
IT for Rare Disease Research
CLIRINX is dedicated to advancing epilepsy and rare disease research through improved IT tools. Whether you're a researcher, advocate, or seeking resources, we're here to enhance IT in rare disease research.
Data Repository
The Rare Disease Data Repository (RDDR) is a centralized platform dedicated to the storage, organization, and dissemination of comprehensive data on rare diseases to accelerate research. Research data is supplied by IRB-approved research studies.
Team Science
The RDDR provides a platform for rare disease organizations and academic researchers to upload their de-identified research data securely so that it may be shared with approved researchers. We are dedicated to internet-based research, team science, and disease advocacy.
Protecting your data
Security measures include SSL (encryption), encryption of data at rest, unique user names and passwords, single sign-on (Okta), role based access, digital signatures, full audit log and data change history, version controlled CRFs and study documents, restricted/encrypted PHI fields, two-factor authentication, multi-Blockchain document timestamps, IP/geolocation restrictions, OS level security, servers only accessible behind firewall or SSH with private key encryption. We also have Cyber and PI Insurance to protect our business and our customers. All these security and privacy features will help to support your HIPAA and 21CFR11 compliance efforts.
You own the data you collect. And, unlike some other software providers, CLIRINX will never analyze, share or sell the data you collect using the CLIRINX software.