Information for researchers

Cohort data

Variable Catalogue for NFBC1966 and 1986 (9.12.2021)

• Load and save the file. 
• 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
• Only the variable catalogue - format is accepted for further evaluation process.

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)

National registers

NFBC research program has obtained research permits to use data from different national registers.

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.

See: 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 documentation from researchers is needed: 1) Findata confidentiality commitment form in English  (Word file) or Findata confidentiality commitment form in Finnish (Word file), and 2) Statistics Finland’s Pledge of secrecy (word  file)

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.

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

Data Transfer Agreement (DTA) is needed with co-operational organisations needing the access to data. DTA is done once the material request is accepted by the research program.

The document is available here: Data Transfer Agreement (DTA) (12/2022)

1. Provide the Recipient organisation information needed for DTA to NFBC project center (nfbcprojectcenter(at)oulu.fi). 
2. After that, the DTA is prepared by the cohort center and electronic signature process using UniOulu Sign system is initiated. 
3. For eSign system, please provide the following information for persons signing from the recipient organisation: First name, Family name, email, mobile phone number with country code (+), Organisation, Title. 

• DTA with Data Processing Agreement (In Finnish) or with Standard contractual clauses (outside the EU) are available from NFBC project center (nfbcprojectcenter(at)oulu.fi)
• NFBC Material Transfer Agreement (MTA) is available from the project center (nfbcprojectcenter(at)oulu.fi)

☐ 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: 

• https://www.oulu.fi/en/university/faculties-and-units/faculty-medicine/northern-finland-birth-cohorts-and-arctic-biobank/nfbc-aineistopyynto#accordion-control-permission-to-publish-the-data

• https://www.oulu.fi/en/university/faculties-and-units/faculty-medicine/northern-finland-birth-cohorts-and-arctic-biobank/nfbc-user-policies

☐ 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.

Permission to publish 

Before submitting your work to be published send your manuscript for review as indicated in the user policies.

• Fill in the material request in the Material request portal and choose Publication.
• Add authors to the researcher(s)-list as contact persons.
• Indicate in the form the number of your original material request.
• Attach the manuscript.
• Check that you have followed the instructions for data referral etc.

Authorship

Finnish National Board on Research Integrity TENK recommendations are followed (see TENK web pages ). 

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):

1. 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

2. 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,

3. 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):

1. 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

2. 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.

Ethics Committee Statement

Cohort 1966: Northern Ostrobothnia Hospital District Ethical Committee 94/2011 (12.12.2011)

Cohort 1986: Northern Ostrobothnia Hospital District Ethical Committee 108/2017 (15.1.2018)

Data Availability Statement

NFBC data are available from the University of Oulu, Infrastructure for Population Studies. Permission to use the data can be applied for research purposes via an electronic material request portal. In the use of data, we follow the EU general data protection regulation (679/2016) and the Finnish Data Protection Act. The use of personal data is based on a cohort participant’s written informed consent in their latest follow-up study, which may cause limitations to its use. Please, contact the NFBC project center (NFBCprojectcenter@oulu.fi) and visit the cohort website (www.oulu.fi/nfbc) for more information. 

Cohort 1966 31y follow-up study

Acknowledgements

We thank all cohort members and researchers who participated in the 31 yrs study. We also wish acknowledge the work of the NFBC project center.

Funding

NFBC1966 received financial support from University of Oulu Grant no. 65354, Oulu University Hospital Grant no. 2/97, 8/97, Ministry of Health and Social Affairs Grant no. 23/251/97, 160/97, 190/97, National Institute for Health and Welfare, Helsinki Grant no. 54121, Regional Institute of Occupational Health, Oulu, Finland Grant no. 50621, 54231. + researchers’ own funding

Cohort 1966 46y follow-up study

Acknowledgements

We thank all cohort members and researchers who participated in the 46 yrs study. We also wish acknowledge the work of the NFBC project center.

Funding

NFBC1966 received financial support from University of Oulu Grant no. 24000692, Oulu University Hospital Grant no. 24301140, ERDF European Regional Development Fund Grant no. 539/2010 A31592. + researchers’ own funding

Cohort 1986

Acknowledgements

We thank all cohort members and researchers who have participated in the study. We also wish acknowledge the work of the NFBC project center.

Funding

EU QLG1-CT-2000-01643 (EUROBLCS) Grant no. E51560, NorFA Grant no. 731, 20056, 30167, USA / NIH 2000 G DF682 Grant no. 50945. + researchers’ own funding

If you want to add new researchers to an already approved project, please send an email to the address NFBCprojectcenter (at) oulu.fi with the information needed:

• Greip material request number of the project the researcher will be joined,
• the researcher's name, institute, e-mail address (University of Oulu UFO account*), and
• signed NFBC User policies document is needed (signed by the researcher and project principal investigator). For User policy document see NFBC user policies section on this web page. 
• Note, that Data transfer or data access agreement is needed for researcher outside University of Oulu (more information from NFBCprojectcenter (at) oulu.fi. 

*Researcher must have an University of Oulu account (UFO account for staff and researchers) to be able to access the project folder at NFBC portal at University of Oulu servers. The UNIV accounts e-mail address is used as a contact information.

Note, that if the project contains national register data, all researcher having access to data need to have up-to-date permissions for national register data. For further information, contact NFBC project center. For  more information see Variable catalogues section on this web page. 

See process flow for projects on University of Oulu server

See process flow for projects on Findata's Kapseli environment 

If data transfer of modified variables between projects is needed, check the need for Greip application by sending a request to NFBCprojectcenter (at) oulu.fi.

• After consultation, use the following service (link opens to a new window) to apply for the data transfer.
• The description document to be attached is here.

The same service is used for returning project's new variables to cohort center (see user policy).

See further instructions here 

• Note that all users need to have a University of Oulu (UNIV/UFO) account.
• Note that project folder having national register data have been closed on the University of Oulu server. Project data are analysed in Findata's secure operating environment Kapseli. Project folders can be opened  on University of Oulu servers without register data by request to cohortsupport@oulu.fi. 
• If the folder needs to be removed to Kapseli environment, contact  cohortsupport@oulu.fi. 

Findata’s secure environment Kapseli is for projects using national register data (Finnish Institute for Health and Welfare (THL), Kela, Statistics Finland (cause of death), and Finnish Centre for Pensions) for NFBC1986 and NFBC1966 projects.  

• New projects are compiled by the research group. For projects moving from University of Oulu server to Kapseli, contact  cohortsupport@oulu.fi. 
• Researchers need to be included Findata's research permit and in Kapseli user application. For those not included, see

Information for researchers  

• Researcher need to have University of Oulu account, contact NFBCprojectcenter@oulu.fi.

Instructions how to access Findata's Kapseli are available from Findata's www-pages. 

Instructions how to use NFBC Kapseli are available here:

• In English set 1
• In English set 2 
• In Finnish set 1 
• In Finnish set 2 

Instructions how to compile data in NFBC Kapseli are available In English and in Finnish at the Kapseli (W:\POIMINTA\).  

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FAQ: If you got 'Bad request' error when loging to Kapseli:  Delete or clear cookies and site data on your browser or open a new private browsing for Kapseli loging/Bad request -virheilmoitus: tyhjennä selaimen välimuisti ja evästeet. Vaihtoehtoisesti kirjautumiseen voi käyttää yksityistä välilehteä. 

Genetic analyses using individual genotype data have to be performed using the nfbcgenetics server on CSC ePouta. In order to have access to ePouta the UNIV/UFO-account and an account at CSC are needed.

See further instructions