Common Patient Questions

Where can I find one of these Centers?
At the initiation of the NephCure Clinical Care Network in 2015, there will be 4 Clinical Care Network Centers. We plan to expand the Network to include 20-30 hospitals and community clinics, strategically located throughout the United States. To see all currently active Network Centers please visit http://NephcureACI.med.umich.edu/Solution/CareNetwork/ActiveSites.

How do you determine who is part of the Network?
Nephrology practices submit an application to be considered as a Care Network Center. The application process is competitive. The key characteristic of a good Center is a commitment to partnership and active participation. Centers may also be selected to align with areas of active NephCure community engagement. If there is not a Center near you and you would like us to consider your area please email us at NephCureACI@med.umich.edu.

I really love my nephrologist, will I need to leave him/her to be treated at one of these Centers?
At this time, in order to participate in the Clinical Care Network your kidney doctor does need to be a member of one of the Network Centers. If your nephrologist is interested in becoming a Care Network Center please have him/her email us at NephCureACI@med.umich.edu.

How can my team collaborate with a Center?
While your nephrology practice may not be a Network Center there are other ways to get involved. The NephCure Accelerating Cures Institute works with other programs to increase involvement in research and educate patients and families. Register to be part of the NephCure Kidney Network at https://www.nephcurekidneynetwork.org/ to be notified about educational and research opportunities in your areas. Also visit https://MyKidneyGuide.org which is a website designed to help support patients and families partner with their healthcare team to learn about nephrotic syndrome.

Can I seek a second opinion at one of the Centers?
Yes you may but please talk with your doctor about this request. Patients, families and doctors make a tremendous team. The NephCure Clinical Care Network’s goal is to support a better understanding of optimal treatment approaches for individuals within and beyond the network.

Is recurrent FSGS part of NACI’s focus?
Yes. As one of the common causes of nephrotic syndrome children and adults with recurrent FSGS are part of the NephCure Clinical Care Network and the overall Accelerating Cures Institute focus. This program is also open all with FSGS, Minimal Change Disease, Membranous Nephropathy, and other conditions that cause an excess of protein to spill from the kidneys.

Is the care really better at one of these Centers?
The NephCure Clinical Care Network’s goal is to partner with patients and nephrologists to build a framework to improve patients’ quality of care and increase the number of helpful treatments available for nephrotic syndrome. Using an established model for other health conditions, the Network will collect and analyze health information from consenting patient health records. Once analyzed, practice and national patterns of care and treatment response will be returned to the network centers. This is a way for physicians and patients to learn from information from health experiences from a large group of patients with a similar health problem. No personally identifying information will be gathered from patient records to be certain to protect the confidentiality of patients.