Proton Clinical Outcomes Research Database

• Research type

  Research Database

• IRAS ID

  253126

• Contact name

  Ed Smith

• Contact email

  ed.smith@christie.nhs.uk

• Research summary

  Proton Clinical Outcomes Research Database

• REC name

  North West - Haydock Research Ethics Committee

• REC reference

  20/NW/0078

• Date of REC Opinion

  31 Mar 2020

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Radiotherapy is the use of high energy beams to target cancer cells. Proton Beam Therapy (PBT) has been used to treat some UK cancer patients abroad since 2008 (on the Proton Overseas Programme) and at The Christie in Manchester since December 2018.

  The Proton Clinical Outcomes (PCO) Research Database is made up of data extracted from patient’s electronic records, which is anonymised (identifiable information is removed) before being shared with researchers.

  The data includes information on diagnosis, stage of the cancer, relevant lifestyle information, date and type of treatment, and scans taken at diagnosis, during and after treatment. Information on survival and side effects of treatment, which are called clinical outcomes, is also collected.

  The database contains the following types of stored data:

  1. Clinical outcomes
  2. Patient-reported outcomes
  3. Imaging data from radiotherapy systems and the Picture Archiving and Communications System
  4. Results of calculations performed on images to plan PBT treatment

  The Proton Clinical Outcomes Unit (PCOU) is a dedicated team whose role is to capture, analyse and publish clinical outcomes data for patients who have had PBT. The team is led by a senior clinician, and includes a statistician, a data scientist and a specialist nurse.

• Research programme

  The Proton Clinical Outcomes (PCO) database will assist researchers both at The Christie and at other hospitals and universities who are involved in Proton Beam Therapy (PBT) research by: • Collecting data on patient's outcomes after treatment • Supporting clinicians, fellows and academics with projects, data access requests and publications • Supporting studies which use outcome data provided by the service • Supporting the development of PBT treatment for other types of cancers Patients monitored by the PCOU include patients treated at The Christie and also patients treated on the Proton Overseas Programme. We aim to use and analyse this ‘real world’ data, which is collected every day during routine PBT treatment in the NHS, in order to help improve our understanding of the effectiveness of PBT and its side effects. With this data we can build up a unique body of knowledge about PBT which can then be applied more widely and potentially help to refine treatment for patients in the future.

• Research database title

  Proton Clinical Outcomes Research Database

• Establishment organisation

  The Christie NHS Foundation Trust

• Establishment organisation address

  Wilmslow Road

  Withington

  Manchester

  M20 4BX