aHUS registry

Members of the Scientific Advisory Board

As of September 2018, the membership includes:

Name Country Institution
Christoph Licht Canada (Chair) The Hospital for Sick Children and University of Toronto
Gema Ariceta Spain Hospital Valle d’Hebron, Barcelona
Gianluigi Ardissino Italy Fondazione IRCCS Cà Granda, Ospedale Maggiore Policlinico, Milan
David Cohen US Columbia University, New York
Fadi Fakhouri France CHU de Nantes-Hôpital Hotel Dieu, Nantes
Véronique Frémeaux-Bacchi France (Co-chair) Hôpital Européen Georges Pompidou, Paris
Larry Greenbaum US Emory University, Atlanta
Nicole Isbel Australia Princess Alexandra Hospital, Brisbane
Sally Johnson UK Newcastle Upon Tyne Hospital, Newcastle
Franz Schaefer Germany University Clinic Pediatric Nephrology, Heidelberg
Marie Ann Scully UK University College London Hospitals NHS Foundation Trust, London
Johan Vande Walle Belgium UZ Gent Dienst Nefrologie, Gent
Leonard Woodward UK aHUS Alliance (Patient Advocate)
Benjamin Miller US Alexion Pharmaceuticals, Inc.

  • The registry is supported by Alexion Pharmaceuticals, Inc., with governance by an independent scientific advisory board (SAB) and national coordinators representing each participating country.
  • Some key responsibilities of the SAB are to:
  • Provide scientific advice on aHUS registry-related matters
  • Propose, discuss, and evaluate program objectives with Alexion
  • Review and provide guidance on future amendments to the protocol, data variables to be collected, and case report refinements (all as appropriate).
  • Provide ad hoc review of documents and periodic phone/email consultation
  • Advise on analyses and scientific questions of interest
  • Review and provide feedback on publication goals and logistics
  • Contribute to the development of the publication plan
  • Establish and follow protocols for the review and approval of external requests for analyses and publications from individual investigators or national coordinators
  • Advise, counsel, and guide individuals on publications that utilize aHUS registry data and resources and/or use the aHUS registry name
  • Review publication drafts before submission to journals or public release

1. Licht et al. BMC Nephrology (2015) 16:207.