Inherited Kidney Diseases (IKD) program

The Inherited Kidney Diseases (IKD) program is a “one-stop shop” that provides patients with comprehensive care for every facet of their disease. The care team is centered in Nephrology, and includes expertise from hepatology, endocrinology, genetics, nutrition, and psychology. A patient navigator guides families through clinic visits, connects them with the right specialists, and serves as a point of contact for families before and after visits.

Conditions we treat

The IKD program integrates and standardizes the multi-disciplinary approach to care for infants, children, and young adults with single gene (inherited) disorders of kidney structure and function. These include:

  • Cystic kidney diseases -- autosomal recessive polycystic kidney disease (ARPKD), autosomal dominant polycystic kidney disease (ADPKD), nephronophthisis (NPHP), Joubert syndrome, Bardet-Biedl syndrome, oro-facial-digital syndrome or other disorders that cause chronic kidney disease and liver disease (congenital hepatic fibrosis).
  • Tubular disorders – Lowe syndrome, Dent disease, renal tubular acidosis (RTA), Bartter-Gitelman disorders, low renin hypertension, nephrogenic diabetes insipidus (NDI)

The IKD program is open to new referrals, current patients at CHOP, and patients interested in second opinions. Our clinic is located on the 9th floor of the Buerger Center for Advanced Pediatric Care.

When your child should come to see us

  • Your child has been diagnosed with any of the inherited conditions we treat. You want the diagnosis confirmed or to have CHOP physicians provide your child’s specialty care.
  • You or your primary physician is looking for help in managing your child's care, particularly with coordinating the input of multiple specialists.
  • Your child has had chronic kidney disease with signs of chronic liver disease without a clear diagnosis.

What we offer

  • Specialized care: In addition to a core team of nephrologists, hepatologists (liver), and geneticists, we have a broad network of relevant consultants that include endocrinologists (growth issues), urologists, diagnostic and interventional radiologists, gynecologists, and pain management experts.
  • Supportive services: The IKD program offers relevant input from experts in nutrition, social work, and psychology.
  • Assistance with planning transition to adult care programs and referral to the CHOP dialysis program and relevant transplant teams.
  • A comprehensive treatment plan: We provide expertise in the comprehensive clinical care of a rare disease with the convenience of seeing multiple specialists in a single clinic session.

Information about research opportunities

The IKD program offers information for patient and parents about disease-specific clinical research / clinical trial opportunities, including recruitment to studies that are currently enrolling patients at CHOP.