The aim of SONG-PKD Pain is to establish a patient-reported core outcome measure (i.e.
short survey) for pain that is meaningful, valid, and feasible for use in all clinical trials involving patients with polycystic kidney disease. We are currently developing a survey to measure pain and are inviting patients with PKD and family members to join us in this effort. If you are interested in being involved or want more information, please complete the form below.


SONG-PKD Pain Expert Working Group

Ron Perrone (Chair) Tufts University School of Medicine, United States
Arlene Chapman |The University of Chicago, United States
Bertrand Knebelmann |Université de Paris Descartes, France
Eva Burnette| Germany
Marie Hogan Mayo Clinic, United States
Niek Casteleijn University Medical Centre Groningen, The Netherlands
Reem Mustafa Kansas University Medical Centre, United States
Richard Lee Australia
Richard Sanford The University of Cambridge, United Kingdom
Ron Gansevoort University Medical Centre Groningen, The Netherlands
Sarah Eastty United Kingdom
Shigeo Horie Juntendo University, Japan