UCD RESEARCH

The Urea Cycle Disorders Consortium (UCDC), an NIH-funded initiative, is a group of healthcare professionals and researchers dedicated to improving the lives of patients with urea cycle disorders (UCDs). The consortium has established centers of clinical and scientific excellence across the United States to work with patients and physicians to provide information and care using the latest information and technology. The UCDC strives to provide current and useful information on UCDs to healthcare professionals and families. The consortium also has laboratory researchers working to develop new treatments and new understandings for urea cycle disorders. 

To better understand UCDs, the consortium has established a national registry for patients, and is conducting long-term studies on the outcome of patients with UCDs. Patients who register are alerted of clinical studies that they may be eligible to participate in. For more information on the registry, click here.

UCDC Centers of Excellence are located at the following institutions:

Vanderbilt Children’s Hospital, Nashville, TN

Marshall L. Summar, MD

Baylor College of Medicine, Houston, TX

Brendan Lee, MD, PhD

Children’s National Medical Center, Washington, DC

Uta Lichter-Konecki, MD, PhD

Yale University School of Medicine, New Haven, CT

Margretta Seashore, MD

University of California Los Angeles (UCLA), Los Angeles, CA

Stephen Cederbaum, MD

Children’s Hospital of Philadelphia, Philadelphia, PA

Marc Yudkoff, MD

Mount Sinai School of Medicine, New York, NY

George Diaz, MD

Rainbow Babies and Children’s Hospital, Cleveland, OH

Douglas Kerr, MD, PhD

Georgetown University, Washington, DC

Thomas Zeffiro, MD, PhD

For further information on the Urea Cycle Consortium Rare Diseases Clinical Research Network, click here.

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