About us

About us


About us


Background and organization

In the mid-1990s, a collaboration was started between all Swedish neurological university clinics to build a common structure for registration of patients with Multiple Sclerosis (MS). This work resulted in a database structure that was initially intended as a support for the patient-related work but which also made it possible to locally manage both quality control and operational follow-up. The Swedish MS register (SMSreg) was officially launched in 2001.

The development of SMSreg and the experience of the benefits for users to work register-based soon aroused the desire among neurologists to work in a similar way even with other neurological diseases. In 2009, therefore, work began on other disease groups within the register. The development of other subregister has been a central component and the register now includes ten subregister and is now called Swedish neuroregister.

Organization chart Swedish neuroregister

The register organization in the Swedish Neuroregister consists of the register holder and the executive office for daily operations as well as the steering group for support in the direction and implementation of the business. In the steering group there are subregister holders for each disease. The subregister has a cross-professional working group with patient representatives. Regional coordinators are available for data improvement and support. The heads of operations at the registering units and their local personal data responsible authorities (LPUA) are responsible for local data quality and coverage, as well as the improvement work at their unit.

Quality improvement of MS healthcare with the help of Swedish neuroregists

Steering group Swedish neuroregister

Anders Svenningsson, representative of the Neurological Society
Anne-Berit Ekström, Sahlgrenska University Hospital Gothenburg
Anne-Marie Landtblom, Uppsala Academic Hospital
Caroline Ingre, Karolinska University Hospital, Stockholm
Elisabet Waldenlind, Karolinska University Hospital, Stockholm
Fredrik Piehl, Karolinska University Hospital Stockholm
Helene Landersten, Neuro patient representative
Ingela Nilsson Remahl, Karolinska University Hospital Stockholm
Jan Hillert, Registrar Karolinska University Hospital
Kristina Lidström, Karolinska University Hospital Stockholm
Kristina Neimi, patient representative of Neuro
Nina Sundström, Norrland University Hospital Umeå
Per Odin, Skåne University Hospital Lund
Rayomand Press, Karolinska University Hospital Stockholm
Ulla Lindbom, Karolinska University Hospital Stockholm
Ulrika Mundt-Petersen, Skånes University Hospital Lund
Adjunct: Leszek Stawiarz, technical developer
Lillemor Bergström, administrative coordinator

Instructional

New national guidelines for MS and Parkinson's disease

New national guidelines for MS and Parkinson's disease

New national guidelines for MS and Parkinson's disease

New national guidelines for MS and Parkinson's disease