Nephrogenetics Program Supports Growing Need for Multidisciplinary Approach

Gal Finer, MD, PhD, a pediatric nephrologist at Lurie Children’s, and genetic counselor Jaime Duncan, MS, CGC, recognized that one way towards better patient outcomes would require getting to the roots. Using the advancements in genetic diagnostic testing have led to a deeper understanding of kidney disease and biology, and the genes and genetic variants found in these disorders.

The clinic will offer a comprehensive evaluation and move towards coordinated care for hereditary kidney disorders, including conditions such as Alport syndrome, salt-wasting disorders, and cystic kidney diseases. Families will meet both the nephrologist and genetic counselor in a single coordinated visit, receiving medical interpretation alongside personalized guidance about genetic testing, inheritance, and family implications.

The integration of nephrology and genetics reflects a growing national trend toward precision medicine, ensuring that care for children with chronic kidney disease (CKD) is not merely aimed at nonspecific management of CKD complications but targeted towards the specific diseases causing each child’s illness.

Beyond our general nephro-genetics clinic, our division is proud to showcase a number of additional specialty clinics for rare genetic kidney disorders. Division head Priya Verghese, MD, MPH, leads the cystinosis program, helping provide quality, comprehensive care for children with this challenging, multisystem disease. In addition, the Multidisciplinary Tuberous Sclerosis Complex (TSC) Clinic is led by nephrologist Jill Krissberg, MD, MPH, and neurologist Joyce Wu, MD. While signs of TSC may not appear until a child is older, some manifestations are shown at birth. Researchers estimate that only one-third of TSC cases are known to be inherited while the other two-thirds result from a random and unpredictable mutation. Genetic testing to identify the genetic mutation and predictive testing of at-risk family members is the first step to plan for the specialized and comprehensive care that will ensue.

A dedicated clinic for Bardet Biedl Syndrome (BBS) will start in early 2026, also led by Dr. Finer and Jaime Duncan. It is estimated that approximately 5,000 people are affected by this rare genetic disease. Most BBS patients will need to see an ophthalmologist, endocrinologist, nephrologist, specialists in weight and wellness, and a geneticist. The clinic will be offered four times a year, every fifth Friday. This visit will allow for the patient to see the specialists at one appointment in a dedicated clinic space. “This is a huge selling point for our patients and their families”, says Jaime Duncan, MS, CGS. “As the first multidisciplinary program for BBS in Illinois, in combination with our connections to ciliopathy researchers and the BBS Foundation, we truly are poised to be a premier treatment location.”