NorCog was established in 2008 with two main aims:
- To harmonize and improve the quality of diagnostic practice across outpatient clinics assessing persons with cognitive symptoms in specialist care units.
- 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.
Consent forms
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 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
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 project | Investigator |
| Epigenetic profiling in psychopathology and dementia: an integrated genetic-epigenetic approach in blood | Sverre 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 Trøndelag | Geir Selbæk |
| Importance of low-grade inflammation in patients with cognitive impairment due to Alzheimer’s disease and stroke | Anne-Brita Knapskog |
| Cognitive and motor predictors of shunt response in patients with idiopathic normal pressure hydrocephalus | Magnhild Dejgaard |
| Walking speed and reduced cognitive function | Rannveig Eidholm |
| Blood-based microRNA for diagnosis and prediction of the course of Alzheimer’s disease | Yehani Wedatilake |
| Longitudinal analyses of functional ageing | Henrik Schirmer |
| Extracellular vesicles as a source of biomarkers for Alzheimer’s disease – a pilot study | Geir 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 people | Knut Hestad |
| Blood and cerebrospinal fluid biomarkers in Alzheimer’s disease | Nenad Bogdanovic |
| Alcohol consumption in older individuals with cognitive impairment and dementia | Sverre Bergh |
| Language and Communication in Multilingual Speakers with Dementia in Norway | Jan Svennevig |
| Brain changes measured with MRI in patients with mild cognitive impairment or dementia and concomitant depression | Maria Lage Barca |
| Language and Cognition in Normal Aging and Dementia | Ingeborg Sophie Ribu |
| 18F-Flutemetamol PET/CT for the diagnosis of Alzheimer’s disease – clinical value and reference levels | Mona-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 municipality | Kristin Taraldsen |
| Validity of the Cognitive Function Instrument (CFI) | Knut Engedal, Geir Selbæk |
| Spatial orientation in patients with mild cognitive impairment and Alzheimer’s disease | Gro 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 service | Sverre Bergh, Mona Michelet |
| Brain imaging phenotypes in dementia – relationship to genetic variants, clinical characteristics and outcome | Ole A. Andreassen |
| DemGen – Identifying genetic risk of dementia: from gene discovery to clinical implications | Ole A. Andreassen |
| Depression and neuropsychiatric symptoms in elderly: mechanisms and association with neurodegeneration | Eirik 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 NorCog | Renate Pettersen |
| Physical activity and dementia – Mapping of daily physical activity in people living at home with dementia | Kristin 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 impairment | Susanne Hernes, Marianne M Falck |
| Cognition and Neuropsychiatric Symptoms in Memory Clinic Patients | Geir 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 dementia | Arvid Rongve |
| Young onset dementia – the difficult diagnosis | Lara Hvidsten, Aud Johannesen |
| Circuit control in Alzheimer’s disease | Marte Mellingsæter |
| A cognitive training program for people with early disease dementia | Johanne Tonga |
| The Norwegian PrELOAD study: PlacEntal dysfunction and LOngterm vAscular related Disease | Nils-Halvdan Morken, Anne-Brita Knapskog |
| Validity of dementia markers in the spinal fluid for Alzheimer’s disease | Anne-Brita Knapskog |
| Multiple nutritional deficiencies causing Dementia of the Alzheimer type | Thomas 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 fitness | Karin Hesselberg |
| Physical function in patients with different degrees of Alzheimer’s disease | Gro Tangen |
| Prognosis in Alzheimer’s disease and MCI with co-morbid depression (The PAD study) | Maria Barca, Karin Persson |
Publications NorCog 2011-2021
Publications can be found under the header “Publikasjoner Norkog 2011- 2019” here.