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REGISTRY Steering Committee -


The REGISTRY Steering Committee will ensure that trial policies governing confidentiality, human subjects, clinical practice, conflict-of-interest and publication are consistent with policies contained in the EHDN constitution.

The EHDN REGISTRY Steering Committee is responsible for
  • selecting site investigators for the study. Participating site investigators for a trial should be selected from the current EHDN listing of qualified investigators who request participation in EHDN trials
  • removing from active trial participation any steering committee members, investigators or other study personal who does not fulfill his/her obligations to the trial or who does not maintain the standards of EHDN with respect to confidentiality, professional conduct, rights of research subjects, conflict-of-interest, disclosure or publication policies.
  • fostering recruitment into REGISTRY
  • developing the protocol of REGISTRY further
  • assisting the PI and Co-PI in the implementation and proper conduct of the trial
  • collaborating with the Scientific Review Committee (SRC) of EHDN on approved EHDN projects using data and materials generated through REGISTRY
  • Members of the steering committee – as all members of EHDN – are entitled to hand in proposals
The task at hand calls for
  • clinicians of same standing in the position to foster recruitment into REGISTRY i.e. senior physicians, well respected in their respective region of origin
  • geneticists to develop the family history component of REGISTRY and to inspire genetic studies on the DNA collected
  • scientist or clinician/scientist to develop the biomarker component
  • Principal investigator (PI) and Co-PI
  • Members according to the criteria as defined above
  • CHDI Foundation (Inc.) representative
Serving as long as REGISTRY is an active trial unless member resigns


  • A. C. Bachoud-Levi (France)
  • A. R. Bentivoglio (Italy)
  • R. Bonelli (Austria)
  • J. M. Burgunder (Switzerland)
  • J. Ferreira (Portugal)
  • J. Frich (Norway)
  • S. N. Illarioshkin (Russia)
  • J. Klempír (Czech Republic)
  • G. B. Landwehrmeyer (PI, Germany)
  • J. Nielsen (Denmark)
  • M. Päivärinta (Finland)
  • S. Pålhagen (Sweden)
  • M. Ramos (Spain)
  • R.A.C. Roos (Netherlands)
  • O. Quarrell (U.K.)
  • C. Saft (Germany)
  • W. Vandenberghe, C. Verellen-Dumoulin (Belgium)
  • J. Zaremba (Poland)

  • O. Handley (PM REGISTRY, UK)
  • J. Giuliano (Representative of the CHDI Foundation Inc.)
  • I. Biunno (Biobank, Italy)
  • S. Dunnett (Ethics, U.K.)
  • T. Illmann (IT, Germany)
  • T. McLean (Clinical Operation Manager)
Ex Officio of the Executive Committee
  • J. Levey (COO)
  • J. Bronzova