our voice matters. The PRIONconnect Patient Insights Network (PIN) amplifies the voice of patients to help researchers and drug developers find better treatments, faster. Register now to become part of a research-ready PIN with participants from around the world.
PRIONconnect serves people and families affected by or at risk for all types of prion disease, including Creutzfeldt-Jakob disease, fatal familial insomnia, and Gerstmann-Straussler-Scheinker disease.
We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the PRIONconnect PIN, we connect participants with advocacy organizations, clinicians, researchers and drug developers for the benefit of all.
A Patient Insights Network, or PIN, is more powerful than a traditional patient registry. It is an interactive, online platform for surveying disease communities, uploading medical records, tracking health outcomes and sharing de-identified disease data. It’s HIPAA compliant, secure and research-ready.
This PIN can help generate research and academic interest in PRION disease. It can expedite trial recruitment and ultimately generate more progress towards treatments and cures. By adding your family's information to this PIN, you help amplify the patient's voice to bring solutions to the PRION community.
Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people.
our voice matters. The PRIONconnect Patient Insights Network (PIN) amplifies the voice of patients to help researchers and drug developers find better treatments, faster. Register now to become part of a research-ready PIN with participants from around the world.
PRIONconnect serves people and families affected by or at risk for all types of prion disease, including Creutzfeldt-Jakob disease, fatal familial insomnia, and Gerstmann-Straussler-Scheinker disease.
We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the PRIONconnect PIN, we connect participants with advocacy organizations, clinicians, researchers and drug developers for the benefit of all.