The most unique aspect of the NephCureKidney Network Patient Registry is that it is governed by a group of patients, patient parents, patient advocates, clinicians, researchers and representatives from industry who work together to ensure that the needs of the NS patient community and the NS research community are met.
Each month this group of 18 individuals meets via conference call to discuss topics focusing on recruitment and retention, patient engagement, data collection, and medical profession engagement. Because each group of stakeholders can voice their perspectives on the call, it is ensured that the NKN registry will remain both patient centered and a valuable tool for the research community.
Want to be involved?
If you are interested, email Joanna Dauber at email@example.com call 610-540-0186 x 36.
Applications will be accepted until April 27th, 2015.