The Swedish Neuro Registries is a national quality registry. It contains eight neurological diagnosis groups.
BackgroundIn the middle of the 1990’s, neurology departments at all university hospitals joined together to create a common structure to register patients with multiple sclerosis (MS). This collaboration resulted in a database structure which was initially designed as a quality assurance support for clinical follow-up. The Swedish MS registry (SMSreg) was launched officially in 2001.
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Leadership of the Swedish Neuro Registries consists of a registry director, a secretariat that oversees the day-to-day operations, and a steering committee which provides support for the direction and implementation of registry efforts. The steering committee includes the registry experts for eight diagnosis-based sub-registries. Each sub-registry has a working group containing professionals from a variety of provider professions and at least one patient or family member. Regional coordinators provide user support and data coverage and quality improvement. The clinics reporting patient data to the national register are responsible for the local data collection and administration of the personal data (LPUA) according to Swedish law. The national register of personal data from the entire country has a centrally responsible authority for storing and managing the data (CPUA).
Steering committee:Jan Hillert (Chairman) - Multiple Sclerosis, Karolinska University Hospital
Ulla Lindbom - Epilepsy, Karolinska University Hospital
Rayomand Press - Inflammatory Polyneuropathy , Karolinska University Hospital
Caroline Ingre - Motor Neuron Disease , Karolinska University Hospital
Fredrik Piehl - Myastenia Gravis, Karolinska University Hospital
Anne-Marie Landtblom - Narcolepsy, University Hospital Uppsala
Sven Pålhagen - Parkinson's Disease, Skånes University Hospital Lund
Elisabeth Waldenlind - Severe Neurovascular Headache, Karolinska University Hospital
Marit Jenset - Neuroförbundet (Patientorgansiation)
Annica Bernehjält - Neuroförbundet (Patientorganisation)
Co-opted member: Leszek Stawiarz, Technical Coordinator
Lillemor Egertz, Administrative Coordinator