Dublin, Ireland October, 2015
KDIGO convened a Controversies Conference on Diagnosis and Management of Patients with Fabry Nephropathy from October 15-17, 2015 in Dublin, Ireland. The objective of this conference was to assess the current state of knowledge related to cell and organ damage by Fabry specific and unspecific mechanisms and its treatment; approaches to screening and diagnosis as well as biochemical and histological follow-up of Fabry disease; optimal prevention of kidney disease; and management for the reduction of comorbidities such as extrarenal organ involvement. The overarching goal was to summarize the current knowledge gaps and propose a research agenda to resolve standing controversial issues. It is hoped that output 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.
Drs. Christoph Wanner (University of Würzburg Hospital, Germany) and Raphael Schiffmann (Baylor Research Institute, Dallas, Texas, USA) co-chaired this conference.
How does alpha galactosidase deficiency lead to cell damage & how can it be repaired?
Presenter: Alberto Ortiz
Epidemiology and the Natural Course of Fabry Disease
Presenter: Raphael Schiffmann
Newborn Screening for Fabry Disease
Presenter: Dietrich Matern
Presenter: Camilla Tøndel on behalf of Uma Ramaswami
Presenter: Derralynn Hughes
Management of Patients with Renal Manifestations
Presenter: David Warnock
Management of Patients with Cardiac Manifestations
Presenter: Aleš Linhart
Management of Patients with Peripheral and Central Nervous System Manifestations
Presenter: Juan Politei
The FOS Registry: How can we improve?
Presenter: Atul Mehta
How can we build on existing registries?
Presenter: Stephen Waldek