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Quality of care and research 

One of the purposes of the Swedish  Neuro  Registries is to use collected data to generate new knowledge about the diseases and patient groups in the registry. When a patient is added to the registry, data regarding how the diagnosis was made is collected in a more structured way than in a typical electronic medical record. This ensures that the diagnoses in the registry are accurate. In addition, parts of the information is mandatory and ensures that the data is more complete and valid. The high quality of the data results in greater usability of the data, both for the quality improvement and for research. Research and quality care go hand in hand!

How researchers can benefit from the Swedish Neuro Registries

Patients whose data is registered in the Swedish Neuro Registries are informed that they may be contacted for possible future inclusion in clinical studies. Research on data that has been anonymized, i.e. the patient’s name and personal identification number have been removed, can be conducted after approval by the ethical review board (Etikprövningsnämnd) All projects must also be reviewed and approved of an internal registry review board, and various boards exist for each sub-registry.

Information in the Swedish Neuro Registries can be used for different types of research, from epidemiology to studies regarding treatment, care research and rehabilitation. The more complete the data set in the sub-registry, the greater the possibilities exist for generating new knowledge from the data. 

Read more about research in Multiple Sclerosis
Read more about research in Narcolepsy
Read more about research in Parkinson's Disease