Our experience in developing and operating the Airway Intervention Registry for Recurrent Respiratory Papillomatosis (AIR-RRP): national data collection
Year: 2023
Type: article
Study design: Observational Study
Abstract: Recurrent respiratory papillomatosis (RRP) is characterised by benign wart-like growths in the respiratory tract caused by the human papillomavirus (HPV). These warts vary in size and grow quickly, causing voice changes and airway obstruction. Whilst the condition is rare, RRP is more common and aggressive in children. There is currently no curative treatment for HPV, therefore RRP is managed by maintaining a safe airway and a serviceable voice by repeated surgery to remove the growths. A lack of specific diagnostic codes prevents reliable case ascertainment of RRP from routine administrative databases such as Hospital Episode Statistics. In 2017 a cross-sectional survey identified 918 RRP patients in the UK, half of whom had received surgical intervention for RRP in the previous 12 months with 16 different interventions. Randomised controlled trials for RRP interventions are difficult due to the rarity of the disease, variation in severity and progression and non-standard care across the NHS. Consequently, there is a lack of definitive efficacy and safety evidence. The only national guidance for RRP interventions is "Radiofrequency cold ablation for respiratory papillomatosis" (NICE IPG434, 2017) which recommended further data collection due to lack of evidence. However, due to the wide variation in RRP management across the NHS, clinical opinion favoured that any data collection should include a comparison of safety and efficacy of all RRP interventions in order to advise which improved patient outcomes and quality of life. To address lack of evidence, and inform the future care of RRP patients, we developed a registry and used it to collect real-world data from patients receiving treatment for RRP in NHS hospitals across the UK. The purpose of this paper is to share lessons learned from this national data collection exercise to inform future clinical registry development.
Source: NIHR Open Research
Authors: Andrew Sims, Kim Keltie, Emma Belilios, Julie Burn, Liz Brown, Aaron Jackson, Steven Powell, Sue Jones, Adam Donne
Language: English
Subfield: Pulmonary and Respiratory Medicine
Field: Medicine
Domain: Health Sciences
Open Access status: diamond
Funders: Alder Hey Children's NHS Foundation Trust, Nottingham University Hospitals NHS Trust, British Laryngological Association, University Hospitals Birmingham NHS Foundation Trust, Swansea Bay University Health Board, University Hospitals Plymouth NHS Trust, National Institute for Health and Care Research, Department of Health and Social Care, University of Cambridge, Imperial College London, Imperial College Healthcare NHS Trust, University College London, University of Nottingham, Cambridge University Hospitals, Newcastle upon Tyne Hospitals NHS Foundation Trust, Great Ormond Street Hospital for Children, University College London Hospitals NHS Foundation Trust, Sheffield Children's NHS Foundation Trust, Barts Health NHS Trust, Liverpool University Hospitals NHS Foundation Trust, Research for Patient Benefit Programme
OpenAlex ID: W4322719536