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Feasibility study for establishing a birth cohort and for testing genetic predisposition to childhood leukemia - informed consent process and participation decisions

Description

This study presents the third follow-up of the LeuBiCo (Leukemia birth cohort) feasibility study, entitled “Feasibility study for establishing a birth cohort and for testing genetic predisposition to childhood leukemia”. The initial feasibility study aimed to investigate the willingness of pregnant women to participate in a birth cohort study involving the collection of blood and umbilical cord blood samples for research purposes.
The aim of the follow-up study (LeuBiCo II) was the investigation of the willingness of participants to take part in a postnatal follow-up survey of the birth cohort and the development and testing of a new web-based survey tool.

The focus of the third follow-up is to explore the informed consent process and participation decisions within culturally and socioeconomically diverse populations (i.e. socially disadvantaged groups, families with migration background) and particularly regarding the collection of biological samples.

The overall aim is to develop practice-based research recommendations for a possible German birth cohort study.

Funding period

Begin:   July 2015
End:   September 2016

Sponsor

  • Federal Office for Radiation Protection

Contact

Dr. phil. Tilman Brand

Cooperation

  • Dr. med. Torsten Frambach (St. Joseph-Stift, Frauenklinik, Bremen)
  • Jun. Prof. Dr. Jacob Spallek (Abt. Epidemiologie & International Public Health, Fakultät für Gesundheitswissenschaften, Universität Bielefeld)