Norsk Parkinsonregister og biobank
DOI:
https://doi.org/10.5324/nje.v31i1-2.5611Abstract
SAMMENDRAG
Norsk Parkinsonregister og biobank fikk status som nasjonalt medisinsk kvalitetsregister av Helsedirektoratet
i 2016 og startet datainnsamling fra pasienter med Parkinsons sykdom og atypisk nevrodegenerativ
parkinsonisme i desember 2018. Registerets hovedmål er å sikre kvalitet og enhetlig diagnostikk, behandling
og oppfølging av pasientgruppen. Dette gjøres ved å samle inn kliniske data, gjennomføre kvalitetsforbedring
av behandlingstilbudet og drive forskning på årsaksforhold og sykdomsmekanismer ved å kombinere
registerdata og biobankmateriale. Registeret har i løpet av de første fire årene med datainnsamling møtt på
en rekke utfordringer knyttet til koronapandemi og ressursknapphet i helsetjenesten. Flere tiltak har blitt
gjennomført for å løse dette og vi ser nå tydelig effekt av disse. Ved utgangen av 2022 hadde registeret en
dekningsgrad på nesten 22 %.
ENGLISH SUMMARY
The Norwegian Parkinson’s Registry and Biobank was granted status as a National Quality Registry by the
Norwegian Directorate of Health in 2016 and startet registration of patients with Parkinson’s disease and
atypical neurodegenerative parkinsonism in December 2018. The main aim of the registry is to ensure quality
and uniform diagnostics, treatment and follow-up of the patient group by collecting clinical data, implementing
quality offers of treatment and conducting research into causal relationships and disease mechanisms by
combining registry data and biobank material. During the first four years of data collection, the Parkinson’s
Registry has encountered a number of challenges related to coronavirus pandemic and resource scarcity in
the health service. Several measures have been implemented to solve these challenges, and we are now
starting to see the effect of these measures. At the end of 2022, a coverage rate of nearly 22 % was achieved.
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Copyright (c) 2023 Kenn Freddy Pedersen, Johannes Lange , Eldbjørg Fiske
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