RRPF Recurrent Respiratory Papillomatosis (RRP) Patient Registry

The RRPF Recurrent Respiratory Papillomatosis (RRP) Patient Registry collects disease-specific natural history data about individuals with Recurrent Respiratory Papillomatosis (RRP), with the goal of improving the understanding of RRP and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation

We are interested in sharing our data with you! If you would like access to the RRPF RRP Patient Registry data for a research project, please contact our registry administrator at registry@rrpf.org for more information. Access to RRPF Patient Registry data is contingent upon project approval by the RRPF Patient Registry Advisory Board.