Tonight began the KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain. The opening reception was a Who’s Who in the global world of aHUS researchers and clinicians, so I was both humbled and honored to speak with these world class aHUS experts from nations all over the world to include Italy, France, the UK, Germany, Sweden, the Netherlands, Turkey, India, China, and the UK. View the full roster, and their affiliations by clicking here.
Wondering what’s happening tomorrow, with such a fabulous array of great aHUS minds and talents all in one location? Sharing, learning, and connecting! After a welcome and overview by KDIGO co-chairs Dr. Richard Smith (University of Iowa) and Dr. Tim Goodship (Newcastle University) the agenda lists five groups by topic, with each topic split into two presentations or brief lectures. Within these topic groups, one lecture will pertain specifically to aHUS while the other will relate to C3G, short for C3 Glomerulopathy (a new term in 2013 to indicate complement-mediated disease which includes Dense Deposit Disease and a similar sub-type C3GN). Our interest as aHUS patient organizations will lead me to focus on KDIGO presentations and information related to atypical HUS.
These opening lectures will center the afternoon discussion Break Out Groups, as conference participants will convene as assigned groups to discuss lists of questions. This is not only a ‘Controversies Conference’ by title alone. It’s likely that gray areas in diagnosis, treatment strategies, genetic testing, and patient monitoring will be thoroughly discussed as differing viewpoints and new information is considered. These are:
Renal pathology: Terry Cook, presenter. Pathology of aHUS
Clinical Phenotype and Assessment: David Kavanagh, presenter. What are the challenges in short-term and long-term patient management?
Genetic Drivers of Disease aHUS: Marina Noris, presenter. What can we learn from genetics? Is genetic testing clinically relevant?
Acquired Drivers of Disease: Véronique Frémeaux-Bacchi, presenter. aHUS and autoantibodies: Their role in disease and their impact on patient management.
Treatment Strategies: Fadi Fakhouri, presenter. aHUS: How should patients be followed long term? Are there options to lifelong Eculizumab?
Participants flying in from around the globe passed over Spain's majestic mountain ranges, then drove through city streets lined with fruit trees sporting a bountiful crop of small oranges. From beauty of Spain's natural glories to the wonderful dedication and strength of purpose from these outstanding aHUS experts, it's been an amazing experience so far. Lofty aspirations are in store for this weekend, as the KDIGO website notes: “The conference also aims to summarize outstanding knowledge gaps and propose a research agenda to resolve standing controversial issues. It is hoped that the deliberations from this conference will inform clinicians of the evidence base for present treatment options and help pave the way for future studies in this area.” As this KDIGO conference unfolds, we’ll be there to report news of interest to the aHUS community from this conference in Barcelona.
POST CONFERENCE Update: Additional Information
Dr. Richard Smith (far left) and Dr. Tim Goodship (right): Co-Chairs of KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain. (Representing aHUS Patient Organizations: Linda Burke)