The Norwegian Registry of Persons Assessed for Cognitive Symptoms (NorCog)

NorCog is a national quality and research registry recruiting patients who are referred for assessment of cognitive symptoms and suspected dementia at outpatient clinics in Norwegian specialist health care units.

NorCog was established in 2008 with two main aims:

  1. To harmonize and improve the quality of diagnostic practice across outpatient clinics assessing persons with cognitive symptoms in specialist care units.
  2. To establish a large research cohort with extensive clinical data and provide an opportunity to link baseline data to important real-world outcomes in regional and national registries.

The registry received status as a national quality registry for cognitive symptoms and dementia in 2013. By the end of 2021, 45 outpatient clinics were participating with data collection, and the registry held data from over 18 000 patients in total. Most of the participating clinics are referred to as memory clinics or outpatient clinics in old-age psychiatric and geriatric units.

A small proportion of the participating clinics in NorCog collect samples in a in an affiliated research biobank, provided that the patient gives a specific consent to this. Some units only collect blood samples, others also collect cerebrospinal fluid (CSF). Blood tests include serum, EDTA plasma, EDTA whole blood, as well as whole blood in PAXgene RNA tubes. Genomic DNA is isolated from whole blood. About 400-500 patients are recruited annually to the biobank, and the collection is ongoing. Oslo University Hospital is the formal owner of the registry data and research biobank, and the Norwegian National Centre for Ageing and Health is managing the registry and biobank.

Participation in NorCog is voluntary and enrolment require written informed consent. During 2009-2021, NorCog has only recruited patients that have the capacity to give informed consent. However, from January 2022, patients who are unable, or have reduced capacity, to provide informed consent can also be included in NorCog based on proxy consent. See updated consent forms in English below.

NorCog consent form patient

NorCog consent form next of kin on behalf of patient

Results from NorCog as a national quality registry

As a national quality registry, a principal aim of NorCog is to contribute to better quality of, and reduce unwarranted variation in, diagnostic practice in the specialist health services in Norway. Indicators to evaluate the quality of the dementia assessments across different hospitals were developed in 2017 and are reported annually in a national, publicly available report on the website of the National Service Environment for Clinical Quality Registries.

The reports are written in Norwegian and can be found at https://www.kvalitetsregistre.no/register/nervesystemet/norsk-register-personer-som-utredes-kognitive-symptomer-i.

Application form for access to data and biomaterial for research

The use of data and biological material from NorCog is subject to ethical and legal regulations, including the General Data Protection Regulation, the Health Register Act, the Health Research Act, and the Register Regulations. The information and biomaterial collected in NorCog can be made available to researchers if access is permitted under these regulations. Applicants from outside Norway are advised to identify a Norwegian collaborator. Enquiries can be submitted to Geir Selbæk geir.selbaek@aldringoghelse.no.

All research projects must be approved by the Regional Committees for Medical and Health Research Ethics in Norway, the Data Protection Officer at the Oslo University Hospital HF and by the NorCog Steering committee. Application/idea/protocol must be sent to Marit Nåvik naam@sthf.no, who will forward the application to the Steering committee for processing. Please use the application form below.

NorCog biobank and registry, data and biological material request form(pdf)

Publishing

The registry shall be mentioned when studies are published on the basis of data from NorCog. Below are suggestions on how to refer to NorKog in the acknowledgment section when publishing (adjust as needed):

We want to acknowledge the Norwegian registry of persons assessed for cognitive symptoms (NorCog), for providing access to patient data (and/or caregiver data, and/or biological material).

Research projects and publications

Data from NorCog have been used in a wide range of research projects within the field of cognitive impairment and dementia. A list of research projects using data from NorCog is presented below. A separate list of publications where data from NorCog is used, is also presented below.

Title  of research projectInvestigator
Epigenetic profiling in psychopathology and dementia: an integrated genetic-epigenetic approach in bloodSverre Bergh
Stretched to the Limit? The role caregiver burden has on the extent of elder abuse among home dwelling persons with dementia.Wenche Karin Malmedal
NORD-MCI: qEEG as a prognostic tool in MCI. A project in six academic memory clinics in Denmark, Iceland, Norway and Sweden. Established by the Nordic Network in Dementia Diagnostics (NIDD)Maria Barca
Prevalence and level of diagnosis in a population-based sample in the county of TrøndelagGeir Selbæk
Importance of low-grade inflammation in patients with cognitive impairment due to Alzheimer’s disease and strokeAnne-Brita Knapskog
Cognitive and motor predictors of shunt response in patients with idiopathic normal pressure hydrocephalusMagnhild Dejgaard
Walking speed and reduced cognitive functionRannveig Eidholm
Blood-based microRNA for diagnosis and prediction of the course of Alzheimer’s diseaseYehani Wedatilake
Longitudinal analyses of functional ageingHenrik Schirmer
Extracellular vesicles as a source of biomarkers for Alzheimer’s disease – a pilot studyGeir Selbæk, Ingrid T. Medbøen
Disentangle subtypes of persons with symptoms of cognitive impairment and dementia using different structural MRI modalities – a cross-sectional and longitudinal study (SAS-MRI study)Karin Persson
The association between blood pressure and dementia in older peopleKnut Hestad
Blood and cerebrospinal fluid biomarkers in Alzheimer’s diseaseNenad Bogdanovic
Alcohol consumption in older individuals with cognitive impairment and dementiaSverre Bergh
Language and Communication in Multilingual Speakers with Dementia in NorwayJan Svennevig
Brain changes measured with MRI in patients with mild cognitive impairment or dementia and concomitant depressionMaria Lage Barca
Language and Cognition in Normal Aging and DementiaIngeborg Sophie Ribu
18F-Flutemetamol PET/CT for the diagnosis of Alzheimer’s disease – clinical value and reference levelsMona-Elisabeth Rootwelt-Revheim
Psychometric properties of the Norwegian version of Montreal Cognitive Assessment (MoCA)Geir Selbæk, Thea Skarpengland
Development of a group training programme for home-dwelling people with cognitive impairment and dementia: a feasibility study conducted in Trondheim municipalityKristin Taraldsen
Validity of the Cognitive Function Instrument (CFI)Knut Engedal, Geir Selbæk
Spatial orientation in patients with mild cognitive impairment and Alzheimer’s diseaseGro Tangen
Persons who are assessed for dementia in the municipal health service – a description and comparison with persons who are investigated in the specialist health serviceSverre Bergh, Mona Michelet
Brain imaging phenotypes in dementia – relationship to genetic variants, clinical characteristics and outcomeOle A. Andreassen
DemGen – Identifying genetic risk of dementia: from gene discovery to clinical implicationsOle A. Andreassen
Depression and neuropsychiatric symptoms in elderly: mechanisms and association with neurodegenerationEirik Auning
Trajectories in real life and risk factors of dementia (TRAIL-DEM)Geir Selbæk
Who sees me? Children of people with dementia.Trine Skjellestad
Vitamin D and cognition (DVIT-COG) – a comprehensive analysis of cognitive and nevropsychological data and biomarkers from patients enrolled in NorCogRenate Pettersen
Physical activity and dementia – Mapping of daily physical activity in people living at home with dementiaKristin Taraldsen
Resource Use and Disease Course in Dementia – REDIC  Sverre Bergh
Agreement between test performance and carers information of cognitive impairment and IADL in memory clinic patients  Karin Persson
Working memory training of the elderly with mild cognitive impairmentSusanne Hernes, Marianne M Falck
Cognition and Neuropsychiatric Symptoms in Memory Clinic PatientsGeir Selbæk, Anne Sofie Helvik
The Incidence and Prognosis of Dementia related to Drug use in out-patients with cognitive impairments (the IPOD-D -study)Hege Kersten
Caregivers of people with dementiaArvid Rongve
Young onset dementia – the difficult diagnosisLara Hvidsten, Aud Johannesen
Circuit control in Alzheimer’s diseaseMarte Mellingsæter
A cognitive training program for people with early disease dementiaJohanne Tonga
The Norwegian PrELOAD study: PlacEntal dysfunction and LOngterm vAscular related DiseaseNils-Halvdan Morken, Anne-Brita Knapskog
Validity of dementia markers in the spinal fluid for Alzheimer’s diseaseAnne-Brita Knapskog
Multiple nutritional deficiencies causing Dementia of the Alzheimer typeThomas Bøhmer, Ingun Ulstein
Functioning in community dwelling older people with mild cognitive impairment and dementia with a focus on instrumental activities of daily living and physical fitnessKarin Hesselberg
Physical function in patients with different degrees of Alzheimer’s diseaseGro Tangen
Prognosis in Alzheimer’s disease and MCI with co-morbid depression (The PAD study)Maria Barca, Karin Persson

Publications NorCog 2011-2022

Publications can be found under the header «Publikasjoner Norkog 2011- 2022» here.