National Quality Registry for Neurological Care (NEUROreg)(previously Swedish MS Registry)

• Registry Manager: Stockholm County Council
• Registry Centre - affiliation: QRC Stockholm
• Start year: 1996
• Classifications used: ICD10
• This registry contains data on: Specialised outpatient care, Debut, Diagnoses, Diagnostic criteria, Pharmaceuticals, Follow-up visits on chronic disease at least every 12 months, Disease activity, Disease progression

Description of registry

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 of NEUROreg 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.

Key metrics:

• 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.

Population

Seventy healthcare institutions nationwide participate in the registries. In total over 20,000 patients are registered. There is information on over 17,000 people with MS (15,000 living), i.e. about 80 percent of all of the country’s estimated 19 000 MS-patients. The annual growth in the number of included patients is about 10 percent, representing about 1000 new registrations of MS patients per year. 2400 patients with Parkinson’s Disease are registered and the other diagnosis are enrolling.

Ages in the registry

All ages.

Total volume of registry

In 2015, a total 20 000 patients were registered, 17,000 with MS.

100,000 clinical visits in total.

Volume over the past operating year

1000 newly registered MS patients. 7000 newly registered clinical.

Coverage rate

About 80 percent of all MS patients in the country. The other diagnoses started to register patients in 2012.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.