The web-based DMGP-registry for lifelong monitoring of individuals with spinal cord injury
In Germany, the post-acute treatment pathways of patients with spinal cord injury (SCI) differ considerably depending on intrinsic, disease-related and extrinsic factors. To date, it is not known to what extent intrinsic (e.g., lesion severity/level, etiology, concomitant diseases, gender, socio-economic status) and extrinsic factors (e.g., treatment track, healthcare payer, quantity of post-inpatient care, availability of lifelong SCI-specific care etc.) impact the treatment outcome, the occurrence of subsequent complications and the frequency of re-hospitalizations.
Therefore, the patient-centered, Germany-wide ParaReg-registry for web-based documentation of the SCI-specific care of individuals with acute and chronic will be implemented. With the financial support of the German Federal Ministry of Education and Research (BMBF) within the framework of the call "model patient-centered registries for health services research", in 2019/2020, the IT requirements for the operation of the registry will be created in the form of electronic case report forms together with quality and general reports. After a beta-testing phase in 2021 at the five SCI centers of the registry group of the DMGP (Deutschsprachigen Medizinischen Gesellschaft für Paraplegiologie e.V), it is planned to start with the routine data acquisition at all 27 German, DMGP-associated SCI centers.
The objectives of ParaReg are 1) to record the medical, social and participatory patient status, 2) to identify factors associated with worse treatment outcome, and 3) to - in the long term - improve patient care, the planning of treatment pathways and the cost efficiency. In detail, epidemiological, social, medical, neurological, functional and quality of life data are documented in a central electronic database for each inpatient stay in a DMGP-center. With the exception of the quality of life assessment, all documented data are routinely collected during the stay as part of the treatment.
From the overall collected data of the ParaReg-registry, priority should be given to the identification of factors that are associated with serious complications leading to a re-admission to a DMGP-associated hospital. The allocation of a unique patient ID allows a lifelong, cross-center and patient-centered documentation. Internationally established neurological and functional assessments in ParaReg allow a comparison of the rehabilitation results in Germany of individuals with SCI in an international context.