The site (www.rrp.org.uk) was developed as part of a research project to determine the most effective and safe treatments for recurrent respiratory papillomatosis (RRP), a condition caused by the human papilloma virus (HPV) which results in warts in the airway, making it difficult to speak and breathe. RRP is a rare disease, more commonly affecting younger people.
An important aspect of the study is to collect quality of life (QoL) measurements from patients with the condition. The website allows participants in the study, or their parents and carers, to complete QoL questionnaires securely on-line, wherever and whenever they wish. Conventionally, QoL questionnaires have been on paper forms and patients have been asked to complete them in clinic. It is hoped that easily accessible on-line forms will prove more convenient for those completing them and lead to improved coverage and capture of quality of life scores.
The study, funded by an NIHR Research for Patient Benefit Award, also involves surgeons entering information about procedures into a secure NHS-wide database. The study is also supported by NICE, The British Association of Paediatric Otolaryngology, The British Laryngological Association, and ENT UK. It is adopted to NICE’s observational data collection programme. Further details of the study, and its progress, can be found on the website.