FARA Registry

Team Name: 
Team Cortez
Team Members: 
Steven Coad
Sandra Morris
Tracy Rericha
Elaine Simone
Faculty Coach: 
Lei Wu

The patient registry will capture demographic and basic clinical information from individuals with FA worldwide through an interactive website. . The registry will store the information collected and FARA will be able to query the database for researchers and pharmaceutical companies who need candidates for clinical trials. A patients' basic contact information and personal health information (PHI) will be housed by the registry so it must be secure according to the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Access to patients interested in and eligible for clinical trials will substantially aide in the reduction of clinical research resources, specifically time and cost. Implementation of this solution will bring researchers and individuals with FA one step closer to a treatment.

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