The Inception Cohort
The inception cohort study is running since May 2013 and includes persons with SCI at an early stage after onset of injury.
Patients are recruited at the time of admission to their first rehabilitation program in one of the collaborating rehabilitation centers (Nottwil, Basel, Sion, Balgrist). Standardized and detailed information from the acute and early rehabilitation period is collected prospectively with foci on biomedical, functional, and community outcomes.
The specific objectives of the inception cohort include the following:
- To prospectively record all incident cases of traumatic and non-traumatic SCI as to ensure an ongoing basic epidemiological monitoring of the SCI Population in Switzerland;
- To prospectively collect all-cause and cause-specific mortality data following SCI;
- To prospectively collect data on morbidity, secondary health conditions and aging following SCI;
- To prospectively collect data on functioning, participation and quality of life of persons with SCI.
The data set of the inception cohort covers personal information, lesion characteristics, the assessment of mortality, secondary health conditions, all ICF-based assessments, and quality of life. At each measurement time point, data will be collected by following means:
- patient questionnaire, covering information on ICF functions, personal factors, participation, and quality of life
- routine and additional clinical assessments of body structures, body functions, and health conditions
- data extraction from the patient records, covering personal patient information, information on body structures and functions, health conditions before and after SCI, and activities and participation
The time schedule of assessments in the clinical setting follows the scheme of the European Multicenter Study about Spinal Cord Injury (EMSCI). Assessments are scheduled at 4, 12, and 24 weeks (time points T1 to T3) after SCI diagnosis and at discharge from first rehabilitation (T4). Scheduled follow-up after discharge is at 1, 2 and 5 years after SCI (T5 to T7).
Subsequently, follow-up of subjects is through the recurrent - every 5-year-community survey. Thus, follow-up in the community setting is principally life-long.