National Quality Registry for Neurological Care
Registry category: Diseases of the nervous system
Certification level: 2
Central personal data controller (CPUA): Karolinska Universitetssjukhuset
Swedish Neuro Registries is a quality register with the aim of ensuring that neurological care is equitable and of high quality and to ensure treatment guidelines are being followed.
Swedish Neuro Registries are represented in all counties and all hospitals where neurological care is provided. It will be the base for national neurological research.
The registry started as an MS registry in 1996. In 2012, it became Swedish Neuro Registries with 8 diagnosis: Multiple Sclerosis, Parkinson’s Disease, Myasthenia Gravis , Narcolepsy, Epilepsy, Motor Neuron Disease, Inflammatory Polyneuropathy and Severe Neurovascular Headache.
The objectives include:
- To help ensure that neurological care in Sweden is of high quality and has an even distribution.
- To ensure that current treatment recommendations for neurology are followed.
- To evaluate the long-term effects of modern disease-modifying drugs on the progression of disease.
- To create and disseminate new knowledge on neurology through research and information.
- Demographic data and medical history (e.g. age of onset, initial symptoms and disease course type).
- Outcome of diagnostic investigation with MRI and cerebrospinal fluid exam.
- Measurement of disease activity.
- Rating scales of disability, quality of life, fatigue and cognition.
- Disease-modifying therapy.
Find contact information on the registry’s website.