Scientific Advisory Board1
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.