Towards a New Generation of Quality Registries in Neurodevelopmental Disorders: The Example of NEUROPSYK

Anna Löfgren Wilteus, Sven Bölte, Jacqueline Borg, Frida Bartonek


Swedish Healthcare Quality Registries are tools for the evaluation and improvement of clinical services and a basis for population-based research. There are presently 11 national quality registries focusing on psychiatric disorders, but none of them cover all ICD-10/DSM-5 defined neurodevelopmental disorders (NDD) across the lifetime and/or care providers. Furthermore, health care professionals have called for more user-friendly, time-saving, and clinically informative registers.

In order to fill this gap, the NEUROPSYK Quality Register was established in 2014 by the Center of Neurodevelopmental Disorders at Karolinska Institutet (KIND), formally and initially a clinical register of Child and Adolescent Psychiatry, Stockholm County Council.

The main objectives of NEUROPSYK are to improve assessment and intervention for individuals with NDD through (i) adequate follow-up of the implementation of existing regional and national guidelines for assessment and treatment of NDDs, (ii) providing clinical decision-making aids, and (iii) conducting large-scale clinical epidemiological research. The registry fully accounts for all current legal requirements concerning quality registries in Sweden (e.g., regulations in the Swedish Patient Data Act).

NEUROPSYK includes patients of all ages receiving a diagnosis under the NDD umbrella in DSM-5. This includes autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), intellectual disabilities, communication disorders, specific learning disorders and motor disorders. Medication and behavioral interventions are recorded and patient outcomes over time are measured with the economical and user-friendly Clinical Global Impression (CGI), Global Assessment of Functioning (GAF/C-GAS), and patient reported health related quality of life (EQ-5D/Disabkids).

NEUROPSYK minimizes administrative work for health care professionals through integration with digital structured patient record and increasing the likelihood for high coverage and data quality. In conclusion, NEUROPSYK combines several strengths making it an example for a new generation of quality and research registers in psychiatry and other areas of health care.



Autism; ADHD; epidemiology; implementation; quality management; assessment; psychiatry; register; neurodevelopmental disorders

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ISSN 2245-8875

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