Get Involved: Be a Part of the Cystic Fibrosis Patient Registry
Hundreds of articles have been published due to the requests and submissions of helpful information
Researchers who wish to request Registry data for their studies need to fill out a complete application, which includes a signed confidentiality agreement, a research proposal, documentation of submission to an IRB, and an spreadsheet that includes the requested variables. The application itself includes instructions regarding the format, regulatory compliance, and other obligations for those who will receive the Registry data.
To date, hundreds of articles relating to pulmonary, biological, and nutritional outcomes among people with CF, have been published.