NHS

Respiratory Papillomatosis Database

The Northern Medical Physics and Clinical Engineering Department

NUTH
NUTH

About

The Problem...

Our Solution...

We want to determine the most effective and safest treatments for RRP. Because RRP is so rare, we need to gather information from as many people with RRP as possible. We have created a database to collect data from all RRP patients around the whole of the UK. The RRP database will help us to:
  1. Identify which treatments work best for RRP
  2. Reduce the number of treatments/hospital visits for RRP patients
  3. Reduce the number of complications seen with RRP treatments
  4. Improve patient symptoms

Information

If you would like to participate in this study, please contact your treating consultant.
For any other information please contact us on NMPCE.air@nuth.nhs.uk

Patient information sheets

CHILDREN 5-11 years
YOUNG PEOPLE 12-15 years
PATIENTS 16 years and over
PARENTS AND GUARDIANS

Useful links and sources of information

NICE Guidance
National Organisation for Rare Disorders

Recruitment

Man

Study recruitment start date

1st April 2018

Keep checking this page for the latest numbers!

Number of Patients Recruited to Study

Current total 95

Current number submitting QoL Data:
Adults Children Totals
Male 42 23 65
Female 17 13 30
Totals 59 36 95

Last updated: 15-08-2019

Participants

Participating Sites
Abertawe Bro Morgannwg University Local Health Board
Aintree University Hospital NHS Foundation Trust
Alder Hey Childrens NHS Foundation Trust
Barts Health NHS Trust
Basildon & Thurrock University Hospitals NHS Foundation Trust
Belfast Health and Social Care Trust
Betsi Cadwaladr University Health Board
Birmingham Childrens Hospital NHS Foundation Trust
Blackpool Teaching Hospitals NHS Foundation Trust
Bradford Teaching Hospitals NHS Foundation Trust
Cambridge University Hospitals NHS Foundation Trust
Cardiff and Vale University Health Board
City of Sunderland Hospitals NHS Foundation Trust
County Durham and Darlington NHS Foundation Trust
Doncaster and Bassetlaw Hospitals NHS Foundation Trust
East Sussex Healthcare NHS Trust
Frimley Park Hospital NHS Foundation Trust
Great Ormond Street Hospital for Children NHS Foundation Trust
Hywel Dda Health Board
Imperial College Healthcare NHS Trust
Isle of Wight NHS Trust
Leeds Teaching Hospitals NHS Trust
Lewisham and Greenwich NHS Trust
London North West Healthcare NHS Trust
Manchester University Hospitals NHS Foundation Trust
NHS Grampian
NHS Greater Glasgow and Clyde
NHS Lothian
NHS Tayside
North Cumbria University Hospital NHS Trust
Nottingham University Hospitals NHS Trust
Oxford University Hospitals NHS Foundation Trust
Pennine Acute Hospitals NHS Trust
Salford Royal NHS Foundation Trust
Sheffield Childrens NHS Foundation Trust
South Tees Hospitals NHS Foundation Trust
St Georges Univeristy Hospitals NHS Foundation Trust
The Newcastle upon Tyne Hospitals NHS Foundation Trust
The Shrewsbury and Telford Hospital NHS Foundation Trust
University College London Hospitals NHS Foundation Trust
University Hospital Southampton NHS Foundation Trust
University Hospitals Birmingham NHS Foundation Trust
University Hospitals of Derby and Burton NHS Foundation Trust
University Hospitals Plymouth NHS Trust
Wirral University Teaching Hospital NHS Foundation Trust
( Click on the map marker to visit the trusts website )

Results

ProcedureNumber
Cold steel forceps14
Microdebrider152
CO2 laser14
KTP laser1
Pulsed dye laser0
Radiofrequency ablation8
Monopolar suction diathermy0
Plasma coagulation0
Other procedures0
Adjuvant therapies39

Number of Procedures Reported
since
1st April 2018

-- 228 --

Surveys

Quality of Life Questionnaire

If you or your child has RRP and you have already given informed assent/consent to data being entered into the RRP database you can submit Quality of Life (QoL) questionnaires anonymously online whenever you like by clicking on one of the links below.

Click here to submit QoL data - ADULTS - 16 years and over

or

Click here to submit QoL data - CHILDREN - under 16 years


You will need your Quality of life (QoL) ID
This is the 8 character code which was given to you when you consented to taking part in the RRP research project.



PLEASE NOTE

Any Quality of Life data which you submit via this website will not be sent directly to your local treating hospital/consultant.
If you are worried about your health for any reason you should contact your local treating hospital/consultant.


Funding & support

This study is funded by the National Institute for Health Research (NIHR) [Research for Patient Benefit programme (Grant Reference Number PB-PG-0416-20037)]. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

NIHR

It is also supported by the National Institute of Health and Care Excellence (NICE), who will use its results to update national guidance

NICE

British Association for Paediatric Otorhinolaryngology (BAPO)

BAPO

British Laryngological Association (BLA)

BLA

ENT UK

ENTUK

Contacts

If you would like to participate in this study, please contact your treating consultant.
For any other information please contact us on NMPCE.air@nuth.nhs.uk


 

Clinical Lead

Mr Adam Donne

(Consultant Otolaryngologist)

Clinical Lead
Scientific Lead

Scientific Lead

Dr Andrew Sims

(Clinical Scientist)

 
 

Database developer

Julie Burn

(Clinical Scientist)

Database developer
Data analyst

Data analyst

Kim Keltie

(Research Scientist)

 
 

Communications

Emma Belilios

(Administrator)

Administrator