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Article History

Received: 11 February 2019

Accepted: 18 October 2019

First Online: 6 November 2019

Ethics approval and consent to participate

: Ethical approval for collecting samples was obtained from the Ethical review board in Umeå, Sweden, in 1999 (Um dnr 99–191). All subjects or their legal guardians gave verbal informed consent to participation at the time of blood sampling for genetic studies. The samples were collected several decades ago, when written consent was neither required nor standard practice. Instead a written consent document describing the study and what was to be stated when collecting the oral consent was submitted to the ethical review board. This document was used by the doctors collecting samples and oral consent. The document was reviewed by the ethics committee and considered sufficient, since it described the information that was provided to all participants of the study and its contents were similar to a normal written consent. Information about the participating individuals, including consent to participate in the study, were collected and archived by the clinician leading the study at the time (co-author Karl-Henrik Gustavson) and the patient’s anonymity has been preserved. In addition, an ethical approval to perform genetic studies in the family material was obtained from the Ethical review board in Uppsala, Sweden, in 2014 (dnr 2014/263). The ethics committee were aware of and approved the consent method.

: Not applicable.

: The authors declare that they have no competing interests.