Towards a New Generation of Quality Registries in Neurodevelopmental Disorders: The Example of NEUROPSYK
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.
Authors who publish with this journal agree to the following terms:
- Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work’s authorship and initial publication in this journal.
- Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal’s published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
- Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).