Information for researchers

The prospective data collected for Northern Finland Birth Cohorts offer an unparalleled opportunity to study multiple determinants of disorders, diseases and their intermediate stages.

The data from the Northern Finland Birth Cohorts - Research program for health and well-being can be requested for research collaboration projects with University of Oulu.

General

Northern Finland Birth Cohorts offer an unparalleled opportunity to study multiple determinants of disorders, diseases and their intermediate stages.

Taking advantage of forthcoming and existing data collections and collaborations we will:

Further uncover genetic, epigenetic and early predictors of the disease-related phenotypes of paramount importance for public health using genetic-multi-omics systems biology, bioinformatics and experimental research approaches to gain further insights into disease mechanisms and pathogenesis over the life-course.Investigate the interplay of environmental and genetic factors in the aetiology of disorders and their intermediate phenotypes in collaboration with other comparable studies.
Provide an enhanced evidence for development of preventive strategies and involvement of potential commercial organisations to reduce the public health burden of diseases.

The data from the Northern Finland Birth Cohorts - Research program for health and well-being can be requested for research collaboration projects with University of Oulu.

NFBC data collection

Read more on the data collections from the link below

Northern Finland Birth Cohorts

Research teams, ongoing projects, publications

Descriptions of research projects and list of publications and thesis

Material request

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Steps for the material request

Process for material request

Instructions for material request portal

Project plan template

NFBC user policies

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Data Transfer Agreement (DTA)

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Check lists for material requests

☐ I am familiar with the material request process for NFBC.

Check list for material requests (new project)

☐ I have attached the variable catalogue and followed the instructions.

☐ I have attached the project plan and used the NFBC project plan template.

· see: https://www.oulu.fi/en/university/faculties-and-units/faculty-medicine/…

☐ I have public description in English and in Finnish, and I have considered the target group being the general population.

☐ I have added a short description of the material request in English.

☐ I have checked that the application and the research plan are consistent.

☐ I have read and informed the research group about the NFBC data User policies and I have attached a signed User policies document with the Greip application.

☐ I have included all researchers as contact persons in the request form.

☐ I have carefully considered and listed those researchers who need the access to the data.

☐ I am aware of the practices for data use at the University of Oulu server.

☐ I am aware of the service prices.

If you are using national register data

☐ I am aware of practices for the national register data use.

If researchers from another organisation than University of Oulu need to access the data

☐ I am aware of practices for data use with organization other than University of Oulu

Check list for request for additional variables or for an amendment of the research plan

☐ I have attached an updated project plan to indicate and rationalize the use of additional variables and/or need for the amendment.

☐ I have included core researchers and leader of the research group as contact persons.

☐ I have indicated the original project number.

☐ I have indicated whether the data is analysed on the University of Oulu server or on the secured data environment (Kapseli).

☐ If additional variables are requested, I have attached the variable catalogue and followed the instructions

If you have a new researcher joining an existing project:

☐ I have read and informed the research group about the NFBC data User policies and have attached a signed User policies document with the Greip application.

If researchers from another organisation than University of Oulu need to access the data

☐ I am aware of practices for data use with organization other than University of Oulu

If you are using national register data

☐ I am aware of practices for the national register data use.

Check list for request to publish with the NFBC data

☐ I am aware that before submitting the manuscript to any journal the permission to publish needs to be requested. See:

☐ In the manuscript, I have followed the instructions for data referral.

☐ In the manuscript, I have used NFBC1966, NFBC1986, Oulu1935, or Oulu1945 instead of NFBC66, NFBC86, Oulu35, Oulu45, or other variants.

☐ In the manuscript, I have indicated the authors and their affiliations.

☐ In the manuscript, I have no track changes or other editing comments.

☐ In the request form, I have added the manuscript as an attachment(s).

☐ In the request form, I have included authors as contact persons.

☐ In the request form, I have added short description in English.

☐ In the request form, I have indicated the project number.

Variables and national registers

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Variable catalogues

Cohort data

NFBC1966 and NFBC1986: Only the variable catalogue format is accepted for further evaluation process.

Oulu1935 and 1945: see descriptions for the Aging Population Cohorts for variable list or contact cohortsupport(at)oulu.fi.

Variable Catalogue for NFBC1966 and 1986 (22.9.2023)

Load and save the file on your computer.
Use the left panel -/+ to select the cohort (1966 or 1986), time point, and variables of interest.
Use Variable name level for selections. Mark the selected variables of interest with 'x' in column named Choice.
Save the file and use as an attachment in Greip application process.
Do not modify, copy-paste, or do other modifications or filtering. Embargo column is used to indicate restrictions in use if existing.
Use the ”Other variables” sheet of the excel to add variables that are not listed in the Catalogue of variables

Additional information for modified variables

Physical activity data from Oura Smart ring (NFBC1986 33y)
Sedentary and physical activity variables extracted from Hookie AM20 hip-worn accelerometer (NFBC1966 46 y)
Sedentary and Physical activity variable from Polar Active monitor (NFBC1966 46y)
Targeted Plasma Lipidomic Profiling, liquid chromatography electrospray ionisation-tandem mass spectrometry (NFBC1966 46y) will be added

National registers

NFBC research program has obtained research permits to use data from different national registers. According to the Act on Secondary Use of Health and Social Data, the analysis of data at individual level is only permitted in environments (Findata Kapseli) that meet the requirements of the regulation as of 1 May 2022.

See national register list for NFBC

Projects planning to use national register data as part of your NFBC study, please contact NFBCprojectcenter(at)oulu.fi beforehand.

Process flow for the projects having national register data.

The Infrastructure for Population Studies updates permissions (new researchers) from the Finnish Social and Health Data Permit Authority (Findata) and Statistics Finland twice a year.

For updates the following actions from researchers are needed:

Send a signed Findata confidentiality commitment by emailing to NFBCprojectcenter(at)oulu.fi

In email, include the NFBC project number and mobilephone number (needed for the access to Findata-provided secure operating environment, Kapseli. See confidentiality commitment from Findata's web pages.
Submit your pledge of secrecy commitment for Statistics Finland’s using their electronic licensing service.

Please, note that you are giving Confidentiality commitment, not remote access commitment. If you have already given electrical confidentiality commitment at the Statistics Finland’s service, for another project for example, please check if you need to do a new one. Additional information from Statistics Finland web pages. Inform NFBCprojectcenter(at)oulu.fi once you have made the Confidentiality commitment at the service.

Note: In the publications the national registers that have been used must be referenced.

During the project activities

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Permission to publish the data

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Data referral

Data referral

Information on NFBC1966 and NFBC1986 data collections (conducted so far) have been added to Fairdata.fi/Etsin. The following citations should be used in publications (taking into account journal’s guidelines):

Cohort NFBC1966 Etsin-service

References to be used when referring to the NFBC1966 data collection in general (describing cohort in the material and methods section):

Use the NFBC1966 data reference

In text: (University of Oulu, 1966)
In the list of references: University of Oulu: Northern Finland Birth Cohort 1966. University of Oulu. http://urn.fi/urn:nbn:fi:att:bc1e5408-980e-4a62-b899-43bec3755243 (in the given format, information on date accessed is not needed for permanent urn reference)

and

Cohort profile article describing the data collection until the age of 46 years

Nordström T, Miettunen J, Auvinen J, Ala-Mursula L, Keinänen-Kiukaanniemi S, Veijola J, Järvelin M-R, Sebert S, Männikkö M. Cohort Profile: 46 years of follow-up of the Northern Finland Birth Cohort 1966 (NFBC1966). International Journal of Epidemiology, 2021; 1-12. dyab109, https://doi.org/10.1093/ije/dyab109.

and when applicable,

NFBC1966 GWAS from the 31y follow-up samples has been described first time in

Sabatti C, Service S:K, Hartikainen A-L, Pouta A, Ripatti S, Brodsky, Jones C.G, Zaitlen N.A, Varilo T, Kaakinen M, Sovio U, Ruokonen A, Laitinen ., Jakkula E, Coin L, Hoggart C, Collins A, Turunen H, Gabriel S, Elliot P, McCarthy M, Daly M.J, Järvelin M.R, Freimer N.B, Peltonen L. Genome-wide association analysis of metabolic traits in a birth cohort from a founder population. Nat Genet. 2009 Jan;41(1):35-46. Epub 2008 Dec 7. doi: 10.1038/ng.271

Cohort NFBC1986 Etsin-service

References to be used when referring to the NFBC1986 data collection in general (describing cohort in the material and methods section):

Use the NFBC1986 data reference

In text: (University of Oulu, 1986)
In the list of references: University of Oulu: Northern Finland Birth Cohort 1986. University of Oulu. http://urn.fi/urn:nbn:fi:att:f5c10eef-3d25-4bd0-beb8-f2d59df95b8e (in the given format, information on date accessed is not needed for permanent urn reference)

and one or two from

The study design and population of the NFBC1986 have been described in

Järvelin MR, Elliott P, Kleinschmidt I, Martuzzi M, Grundy C, Hartikainen AL, Rantakallio P. Ecological and individual predictors of birthweight in a northern Finland birth cohort 1986. Paediatr Perinat Epidemiol. 1997 Jul;11(3):298-312. doi: 10.1111/j.1365-3016.1997.tb00007.x. PMID: 9246691.
Järvelin MR, Hartikainen-Sorri AL, Rantakallio P. Labour induction policy in hospitals of different levels of specialisation. Br J Obstet Gynaecol. 1993 Apr;100(4):310-5. doi: 10.1111/j.1471-0528.1993.tb12971.x. PMID: 8494831.

Publications with the national register data

In publications where the national register data have been used, the relevant register must be referenced.