Early life risk and long-term resilience

Jaekel, J., Dathe, A.-K., Brasseler, M., Bialas, J., Jokiranta-Olkoniemi, E., Reimann, M., Ludwig, R. J., Hane, A. A., Welch, M. G., & Hüning, B. M. (2024). Infant regulatory problems and the quality of dyadic emotional connection – a proof-of-concept study in a multilingual sample. Frontiers in Child and Adolescent Psychiatry. https://doi.org/10.3389/frcha.2023.1304235

Baumann, N., Anderson, P. J., Johnson, S., Marlow, N., Wolke, D., & Jaekel, J. (2024). Harmonisation of assessments of attention, social, emotional, and behaviour problems using the Child Behavior Checklist and the Strengths and Difficulties Questionnaire. International Journal of Methods in Psychiatric Research. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10786184/

Jaekel, J., Heinonen, K., Baumann, N., Bilgin, A., Pyhälä, R., Sorg, C., & Räikkönen, K., Wolke, D. (2023). Associations of crying, sleeping, and feeding problems in early childhood and perceived social support with emotional disorders in adulthood. BMC Psychiatry, 23 (394). https://doi.org/10.1186/s12888-023-04854-1

Wolke, D., Baumann, N., Jaekel, J., Pyhälä, R., Heinonen, K., Räikkönen, K., Sorg, C., & Bilgin, A. (2023). The association of early regulatory problems with behavioral problems and cognitive functioning in adulthood: Two cohorts in two countries. Journal of Child Psychology and Psychiatry, 64, 876-885. https://doi.org/10.1111/jcpp.13742

We have received funding for a New Research Initiative project from Profi6 FIBROBESITY, Strengthening healthy emotional co-regulation of mothers with PCOS and obesity and their infants (10.2024 - 12.2025). Welcome to new PhD researcher Maria Kohn!

We received infrastructure and equipment funding from Profi7 FRONT, Acquisition of research infrastructure for portable assessment of social bio-behavioural co-regulation, mental health, and neurodevelopment (2023). New data collection is underway.

The Signe and Ane Gyllenberg Foundation funded the project Psychosomatic risk and resilience from birth to adulthood (2022-2023). Several new collaborations have emerged from this project.

PRIVACY NOTICE FOR SCIENTIFIC RESEARCH PARTICIPANTS
EU General Data Protection Regulation
Art. 13 and 14
Date: 29.10.2024

Information for Research Participants

You have taken part in one of the scientific studies listed below.
Pseudonymous and/or anonymous data analyses are now organized by the University of Oulu. This notice describes how your personal data will be processed in the study.

Participation in the study is voluntary. There will be no negative consequences for you if you choose not to participate in the study or if you withdraw from the study. However, if you withdraw from the study, data collected prior to your withdrawal may still be used in the study. For more information on your rights and how you can affect the processing of your personal data, please see section 17 of this notice.

1. Data Controller

University of Oulu
Address: PL 8000 90014 Oulun yliopisto (Pentti Kaiteran katu 1, Linnanmaa)

Contact person in matters concerning the project:
Name: Prof. Dr. Julia Jäkel
E-mail: julia.jaekel@oulu.fi

2. Description of the study and the purposes of processing personal data

Studies have documented differences in behavioural interactions between preterm and term born children with their parents, but samples are small and sometimes selective. It is not known to what extent parenting behaviours are associated with preterm children’s long-term outcomes. Our aims are 1) to assess differences in parenting behaviour between preterm and term born children’s mothers and fathers, and 2) to assess to what extent specific parenting behaviours are associated with children’s developmental outcomes. A systematic review protocol is registered with PROSPERO, #CRD42021256436. For the individual participant data (IPD) meta-analyses, we analyse pooled pseudonymized and/or anonymized data from 11 international studies.

3. Parties and their responsibilities in research collaboration

There is one controller for the data processed in this study, the University of Oulu. The role of all other collaborating parties is only to contribute pseudonymised or anonymous data.
Participants may make all requests concerning the rights of the data subject to the following contact person:
Name: Prof. Dr. Julia Jäkel
E-mail: julia.jaekel@oulu.fi

4. Principal investigator or responsible research group

The contact person and only persons processing personal data in the study is the study PI.
Name: Prof. Dr. Julia Jäkel
E-mail: julia.jaekel@oulu.fi

5. Contact details of the Data Protection Officer

You can contact the Data Protection Officer of the University at dpo@oulu.fi.

6. Name, nature and duration of the study

Name of the study:
Parenting behaviour and long-term outcomes for children born preterm – IPD meta-analyses

☒ Monitoring study/longitudinal study

Duration of the study – how long your personal data will be processed for this study:
5 years

7. Lawful basis of processing

Personal data is processed on the following basis, which is based on Article 6(1) of the General Data Protection Regulation:
☒ performance of a task carried out in the public interest or in the exercise of official authority vested in the controller:
☒ scientific or historical research purposes or statistical purposes

8. Personal data included in the research materials

Pseudonymised or anonymized information on biological sex, birth (gestation, weight, multiples), neurodevelopment, behaviour, maternal education level and single mother status. Pseudonymised here means that individual participants cannot be identified in the data. Participants were given a code, and a ‘key file’ might exist at the original study location that connects the code with participants’ identities. The researcher at the University of Oulu does not have access to any of these key files.

9. Sensitive personal data

The following sensitive personal data will be processed in the study:
☒ Health

Sensitive data is processed on the following basis, which is based on Article 9(2) of the General Data Protection Regulation:
☒ Scientific or historical research purposes or statistical purposes

10. Sources of personal data

Study archives of existing cohort data, please see the list below:
a. Germany: The Bavarian Longitudinal Study (BLS/BESt), Munich and Bonn
b. Germany: The Mannheimer Risikokinderstudie, Mannheim and Potsdam
c. Finland: The PIPARI cohort, Turku University Hospital, Turku
d. Denmark: The preterm birth study cohort, Rigshospitalet, Copenhagen
e. Italy: The Bologna preterm birth cohort, Bufalini Hospital, Cesena
f. The Netherlands: The Study on Attention of Preterm children (STAP) cohort, Utrecht
g. United Kingdom: The GAIN Study, Southeast England
h. Israel: The preterm birth study, Ben Gurion University of the Negev
i. Australia: The Victorian Infant Brain Studies (VIBeS) and the Victorian Infant Brain
Studies 2 (VIBeS2) cohorts, Melbourne
j. New Zealand: The Canterbury Preterm Study, Christchurch

11. Transfer and disclosure of the personal data to third parties

n/a

12. Transfer or disclosure of personal data to countries outside the EU/European Economic Area

No data is transferred outside of the EU.

13. Automated decisions

No automated decisions are made.

14. Safeguards to protect the personal data

☒ The data is confidential.

Protection of manual material:

Personal data processed in IT systems:
☒ username ☒ password ☒ logging
☒ other: the processed data is also pseudonymized in the IT systems

Processing of direct identifiers:
☒ Direct identifiers were not included with the data at any point

15. Processing of personal data after the completion of the study

☒ The research material will be deleted

16. Your rights as a data subject, and exceptions to these rights
The contact person in matters concerning the rights of the participant is the person mentioned in section 1 of this notice.

Withdrawing consent (GDPR Article 7)
You have the right to withdraw your consent, provided that the processing of the personal data is based on consent. The withdrawal of consent will not affect the lawfulness of processing based on consent before its withdrawal.

Right of access (GDPR Article 15)
You have the right to obtain information on whether or not personal data concerning you are being processed in the project, as well as the data being processed. You can also request a copy of the personal data undergoing processing.

Right to rectification (GDPR Article 16)
If there are inaccuracies or errors in your personal data undergoing processing, you have the right to request their rectification or supplementation.

Right to erasure (GDPR Article 17)
You have the right to request the erasure of your personal data on the following grounds:

a) The personal data are no longer necessary for the purposes for which they were collected or otherwise processed.
b) You withdraw the consent on which the processing was based, and there are no other legal grounds for the processing.
c) You object to the processing (the right to object is described below), and there are no justified grounds for the processing.
d) The personal data have been unlawfully processed, or
e) The personal data must be erased to comply with a legal obligation in Union or Member State law to which the controller is subject.

The right to erasure does not apply if the erasure of data renders impossible or seriously impairs the achievement of the objectives of the processing in scientific research.

Right to restriction of processing (GDPR Article 18)
You have the right to restrict the processing of your personal data on the following grounds:

a) You contest the accuracy of the personal data, whereupon the processing will be restricted for a period enabling the University to verify their accuracy.
b) The processing is unlawful and you oppose the erasure of the personal data, requesting the restriction of their use instead.
c) The University no longer needs the personal data for the purposes of the processing, but you need them for the establishment, exercise or defence of legal claims.
d) You have objected to processing (see details below) pending verification of whether the legitimate grounds of the controller override those of the data subject.

Right to data portability (GDPR Article 20)
You have the right to request to receive the personal data you have submitted to the University in a structured, commonly used and machine-readable format and have the right to transmit these data to another controller without hindrance from the University, provided that the processing is based on consent or a contract, and the processing is carried out by automated means.

When exercising your right to data portability, you have the right to have your personal data transmitted from one controller to another, where technically feasible.

Right to object (GDPR Article 21)
You have the right to object to processing your personal data, provided that the processing is based on the public interest or legitimate interests. The University will no longer have the right to process your personal data unless it can demonstrate compelling legitimate grounds for the processing that override the interests, rights and freedoms of the data subject, or unless it is necessary for the establishment, exercise or defence of legal claims. The University can continue processing your personal data also when necessary for the performance of a task carried out for reasons of the public interest.

Derogating from rights
In certain individual cases, derogations from the rights described above in this section “Your rights as a data subject”, and exceptions to these rights may be made on the basis of the GDPR and the Finnish Data Protection Act, insofar as the rights render impossible or seriously impair the achievement of scientific or historical research purposes or statistical purposes. The need for derogations will always be assessed on a case-by-case basis.

Right to lodge a complaint
You have the right to lodge a complaint with the Data Protection Ombudsman’s Office if you think your personal data has been processed in violation of applicable data protection laws.

Contact details:

Data Protection Ombudsman’s Office (Tietosuojavaltuutetun toimisto)
Address: Ratapihantie 9, 6th floor, 00520 Helsinki
Postal address: B.O. Box 800, 00521 Helsinki
Tel. (switchboard): 029 56 66700
Fax: 029 56 66735
E-mail: tietosuoja(at)om.fi