Rare Kidney Diseases Clinic

The multidisciplinary renal disease clinics, the Rare Renal Disease Clinic and the Renal Genetics Clinic, provide comprehensive diagnostic and management services for both patients and physicians. The clinics see both adult and pediatric patients and are staffed by specialists in adult nephrology, pediatric nephrology, genetic counseling, renal nutrition, and social and financial support personnel.

The clinics have a national and international reputation in the complement-mediated renal diseases, atypical hemolytic uremic syndrome (aHUS), and the C3 glomerulopathies (C3G – dense deposit disease and C3 glomerulonephritis), as well as a wide range of other genetic renal diseases.

In addition, the clinics have a longstanding collaboration with the Iowa Institute of Human Genetics and with the Molecular Otolaryngology and Renal Research Laboratory (under the scientific direction of Dr. Richard Smith), which provides:

  • Functional complement assays
  • The state-of-the-art genetic screening (KidneySeq, Cascade)
  • The molecular diagnostic tools required to
    • facilitate accurate, exhaustive evaluation of more than 100 genetic and acquired abnormalities that form the basis of rare kidney diseases.

Rare Renal Disease Clinic

Director: Carla M. Nester, MD
319-356-7249

Services

  • National and international clinical referral center for children and adults with:
    • Atypical hemolytic uremic syndrome (aHUS)
    • C3 glomerulonephritis (C3GN) 
    • Dense deposit disease (DDD)
  • Onsite comprehensive genetic and functional testing of the complement system through the Molecular Otolaryngology and Renal Research Laboratory
  • Physician and patient remote consultation services
    • Supported by the Rare Renal Group Meeting  
      • A University of Iowa multidisciplinary weekly meeting directed by Dr. Richard Smith and Dr. Carla M. Nester
      • Staffed by clinicians, geneticists, bioinformaticians, and basic scientists
  • Research portal to state-of-the-art complement and complement therapeutics for interested patients and/or physicians
  • Through its collaboration with KidNeeds (Founders: Richard Smith and Lynne Lanning), the Rare Renal Disease Clinic has a longstanding tradition of participating in yearly family support and education

Diseases With Special Focus

  • Atypical hemolytic uremic syndrome (aHUS)
  • C3 Glomerulopathy (C3G)
    • Dense Deposit Disease (DDD also sometimes called Type 2 MPGN)
    • C3 glomerulonephritis (C3GN)
  • Membranoproliferative glomerulonephritis Type 1 (MPGN 1)

Renal Genetics Clinic

Director: Christie Thomas, MD
319-356-4216

Services

  • Consolidated evaluation and management of rare inherited renal diseases such as Fabry disease and nephronophthisis into one clinic
  • Coordination of appropriate consultative services for patients with multisystem manifestations and to direct appropriate genetic testing
  • Consultation and management for inherited tubulopathies (such as renal tubular acidosis and hypokalemic syndromes)
  • Diagnostic consultation for patients with uncharacterized inherited renal disease
  • Diagnostic evaluation for patients with familial renal stone disease
  • Evaluation of potential kidney transplant recipients at risk for genetic renal disease
  • Onsite comprehensive genetic testing of renal disease genes (Kidneyseq panel) through the Iowa Institute of Human Genetics
  • Screening for family members at risk for any inherited renal disease

Diseases With Special Focus

  • Alport syndrome
  • ApoL 1 nephropathy
  • Bartter syndrome
  • Branchio-oto-renal syndrome
  • Cystinosis
  • Fabry disease
  • Gitelman syndrome
  • Inherited FSGS syndromes
  • Juvenile nephronophthisis
  • Medullary cystic kidney disease
  • Renal cysts and diabetes
  • Renal tubular acidosis

Care Team

Physician, Internal Medicine

Physician, Otolaryngology - Head and Neck Surgery