Responsibilities

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

General
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

• Principle investigator (PI) and Co-PI
• Members according to the criteria as defined above
• High-Q representative

Proposed Members

• A.-C. Bachoud-Levi (France)
• A. R. Bentivoglio (Italy)
• R. Bonelli (Austria)
• J. M. Burgunder (Switzerland)
• J. Ferreira (Portugal)
• A. Heiberg (Norway)
• G. B. Landwehrmeyer (PI, Germany)
• J. Nielsen (Denmark)
  
• M. Päivärinta (Finland)
• S. Pålhagen (Sweden)
• M. Ramos (Spain)
• R.A.C. Roos (Netherlands)
• S. Tabrizi (Co-PI, U.K.)
• T. Uhrova (Czech Republic)
• W. Vandenberghe, C. Verellen-Dumoulin (Belgium)
  
• J. Zaremba (Poland)


• O. Handley (PM REGISTRY, UK)
• D. Van Kammen (Representative of the CHDI Foundation Inc.)
  
• I. Biunno (Biobank, Italy)
• S. Dunnett (Ethics, U.K.)
• T. Illmann (IT, Germany)
• H. Padieu (LANCO, France)
  

• J. Levey (COO)
• M. van Walsem (LANCO, Nordic)