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DKFZ Patient Advisory Council for Cancer Research

The DKFZ Patient Advisory Council for Cancer Research advises the DKFZ management board and introduces the patient perspective into the DKFZ research strategy. The council discusses current topics in cancer research, the general research framework in Germany and the research strategy as well as selected research projects of DKFZ. It reports directly to the DKFZ management board and issues statements and recommendations in particular cases.

The DKFZ Patient Advisory Council for Cancer Research supports the management board and scientists with its personal expertise and experience to better understand the patient's expectations and to recognize unforeseen risks or barriers, and identify unintended consequences that could result from the implementation of research projects or strategies.
In addition, the council supports DKFZ in enhancing the understanding of and trust in modern cancer research in the public, in supporting strategic research goals on a political level and in strengthening the collaboration with non-scientific partners.

Currently, the council is composed of 12 members, which are all survivors or parents of survivors of different cancer maladies. However, the members fulfil their tasks in the council as representatives of cancer patients across all entities. The Council is chaired by Rudolf Hauke and usually holds its meetings twice per year. The Council meeting is preceded by a tailored "Patient Academy", in which the members are trained on current developments in cancer research. In addition, the council members are entitled to attend DKFZ events.

From left, back row: Ralf Rambach, Uli Roth, Bastian Schwarz; middle row: Bärbel Söhlke, Karin Arndt, Stefanie Houwaart; front row: Rudolf Hauke, Dirk Hellrung
© DKFZ

Members

(in alphabetical order)

Karin Arndt
Willi Daniels
Johannes Förner
Rudolf Hauke (Chair)
Dirk Hellrung (2nd Vice Chair)
Richild von Holtzbrinck
Stefanie Houwaart (1st Vice Chair)
Ralf Rambach
Michael Roth
Uli Roth
Bastian Schwarz
Bärbel Söhlke

Coordination and requests

Council Meetings

  • 14.11.2018 – Inaugural Meeting
    • Visit of NCT and the DKFZ Sequencing Facility
    • Guest Lecture on the Council of Research Advocates (NCI, Bethesda, USA)
    • Approval of rules of procedure
  • 22.05.2019 – second meeting
    • "Patient Academy": Immunology and Immunotherapy
    • Visit of the center for preclinical research
    • Current topic: Animal experiments in cancer research
    • Issue of a recommendation to the management board
  • 09.10.2019 – third meeting
    • "Patient Academy": molecular mechanisms of carcinogenesis
    • Current topic: cancer prevention
  • 06.04.2020 - Statement during the COVID-19 pandemic
    • Statement of the Patient Advisory Council on DKFZ activities during the COVID-19 pandemic
  • 20.05.2020
    • Meeting cancelled due to COVID-19 pandemic
  • 07.10.2020 - fourth meeting (virtual)
    • "Patient Academy": ethical principles for handling research data and introduction of data protection
    • Current topic: data protection in medical research
    • Issue of a recommendation to the management board
  • 22.04.2021 - fifth meeting (virtual)
    • "Patient Academy": patient participation in cancer research
    • Current topic: mission statement of the Patient Advisory Council
  • 13.10.2021 - sixth meeting
    • "Patient Academy": clinical trials
    • Current topic: regulatory aspects of clinical trials in pediatric oncology.
    • Issue of a recommendation to the management board
  • 16.11.2021 - Open letter to all citizens.
    • Open letter of the Patient Advisory Council with call for vaccination against COVID-19
  • 13.05.2022 - seventh meeting (virtual).
    • "Patient Academy": epidemiological basis and cancer survivorship.
    • Current topic: Role of the Patient Advisory Council for Cancer Research
  • 30.09.2022 - eighth meeting
    • Current Topic: Transfer of research results into society, health system and industry

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