Paediatric spinal cord injury and long term social outcomes

• Research type

  Research Study

• Full title

  Paediatric spinal cord injury and long-term social outcomes.

• IRAS ID

  282310

• Contact name

  Julie Steen

• Contact email

  julie.steen@nhs.net

• Duration of Study in the UK

  0 years, 11 months, 30 days

• Research summary

  This is a questionnaire study using structured telephone interviews or participants being interviewed face to face in a private hospital setting if an inpatient. It is based around patients from a single centre. The MCSI has a local database from where participants with paediatric onset (<18 years) injury will be identified and invited to participate by postal invitation and sent a copy of the information sheet.
  Participants will also be identified and invited to participate when seen in their clinic appointment and handed a copy of the information sheet to consider participating in the study. Similarly participants with adult onset injuries with comparative neurological level (tetraplegia/ paraplegia) and severity (based on ASIA scale) will be noted. We aim to recruit 50 patients in each group. Interested participants will be offered a one off interview (either over the telephone or face to face if a current inpatient). The interview comprises of a questionnaire which is prepared from common international data set. An international project was started in 2002 to select elements to be included in International Spinal Cord Injury (ISCoS) Data Sets. The National Institute on Neurological Disorders and Stroke (NINDS) of the US National Institutes of Health (NIH) has publicly released a comprehensive set of Common Data Elements (CDEs), including expert working group recommendations and case report forms, for use in Spinal Cord Injury Clinical Research and Clinical Trials. These data sets will be used to assess social activity and participation, and quality of life. The interview will also capture details of injury: age, aetiology, level and severity along with medical comorbidities. Appendix 1 attached is the questionnaire. Part 1 explains about the ISCoS dataset questions, description of options and code for each response. Part 2 of the form has the questionnaire scoresheet.

• REC name

  London - Bromley Research Ethics Committee

• REC reference

  22/PR/0745

• Date of REC Opinion

  20 Jun 2022

• REC opinion

  Further Information Favourable Opinion