[Germany-wide, Web-based ParaReg Registry for Lifelong Monitoring of People with Spinal Cord Injury: Data Model, Ethico-legal Prerequisites and Technical Implementation]. / Das deutschlandweite, webbasierte ParaReg-Register zur lebenslangen Dokumentation von Querschnittgelähmten ­ Datenmodell, rechtlich-ethische Voraussetzungen und technische Implementierung.

OBJECTIVE: In Germany, treatment paths for patients with acute spinal cord injury (SCI) differ considerably depending on intrinsic, disease-specific and extrinsic factors. Which of these factors are associated with improved outcome with fewer subsequent complications and inpatient re-admissions is not clear. The German-wide, patient-centered, web-based ParaReg registry will be implemented to improve the long-term quality of patient care and the planning of treatment paths with increased cost-effectiveness. METHODS: In the 2017-18 conceptualization phase, the data model of the registry was developed in an iterative process of the ParaReg steering committee together with the extended DMGP board and patient representatives. In ParaReg, routine social and medical data as well as internationally established neurological, functional and participation scores will be documented. The assignment of a unique patient ID allows a lifelong, cross-center documentation of inpatient stays in one of the 27 SCI centers organized in the German-speaking Medical Society for SCI (DMGP). The ParaReg data protection concept and patient information/consent are based on the Open Source Registry for Rare Diseases (OSSE) which were extended by GDPR-relevant aspects. RESULTS: In the realization phase, which started in 2019, the information technology infrastructure was implemented according to the clinical ID management module of the Technology and Methods Platform for Networked Medical Research (TMF). In parallel, the legal and ethical prerequisites for registry operation under the patronage of the DMGP were created. Recommendations of the working group data protection of the TMF were integrated into ParaReg's data protection concept. Based on the feedback from the alpha test phase with documentation of the hospitalization data of 40 patients, the ergonomics of the electronic case report forms were improved in particular for data entry on mobile devices. CONCLUSION: After completion of the monocentric alpha test phase, the multicenter data acquisition was started in 5 DMGP-SCI centers. The sustainability of ParaReg is ensured by the structural and financial support of the DMGP after expiry of the funding by the German Federal Ministry of Education and Research (BMBF).

[Guidelines: neurogenic bowel dysfunction in spinal cord injury (long version)]. / Leitlinie: Neurogene Darmfunktionsstörung bei Querschnittlähmung (Langfassung): Entwicklungsstufe: S2k, AWMF-Register-Nr.: 179-004.

The guidelines (AWMF register number: 179-004) on neurogenic bowel dysfunction (NBD) in spinal cord injury of the German-speaking Medical Society for Paraplegiology is addressed to all persons who care for people with congenital or acquired paraplegia with NBD. In particular, doctors, nurses and therapists are addressed. The multiprofessionally developed guidelines (involving neurourologists, visceral surgeons, gastroenterologists, health and nursing staff, nutritionists and associated professional societies in the review process) provides practical support for the care of patients with NBD. Definitions and up to date knowledge on the diagnostics of NBD as well as on the necessary conservative bowel management are conveyed in order to ensure the competent treatment of patients with NBD. The concept of NBD and its clinical implications are described. Drug interventions and surgical procedures are explained in brief and recommendations are given. The main objective of the present guidelines is to prevent complications including fecal incontinence and constipation and thus to positively influence the quality of life of those affected. Helpful appendices, which can be used in everyday life, complete the guidelines.

A first report on Hb Q-Iran in association with alpha-thalassemia in a case of spinal ischemia.

BACKGROUND: Hemoglobin Q-Iran is a rare variant which has not been described in association with alpha-thalassemia to date. We present the case of a Turkish patient who developed spinal ischemia. METHODS: Spinal ischemia was diagnosed clinically, via magnetic resonance imaging and angiographically. Blood samples were analyzed by high performance liquid chromatography, electrophoresis, gene sequencing, hematological and biochemical analysis. RESULTS: We detected hemoglobin Q-Iran in association with alpha-thalassemia. The same hemoglobinopathy was detected in two members of the patient's family. CONCLUSIONS: As various differential diagnosis approaches failed to reveal the cause of spinal ischemia, the combined hemoglobinopathy was eventually postulated.