Adrenoleukodystrophy (ALD)

The University of Minnesota is the world’s most experienced center in the treatment of patients with cerebral ALD.

We have several clinical trials for ALD patients, and we transplant more cerebral ALD patients than any other center in the United States. We have published extensively on the clinical aspects of ALD, including biomarkers, oxidative stress, neuropsychology, and imaging.

We understand the difficult choices that parents and guardians have to make when considering a blood and marrow transplant. Our specialists have had the opportunity to care for and follow many patients with ALD, and they are prepared to address your child’s complex medical needs. This chart shows how our experience compares to other transplant centers.

Adrenoleukodystrophy Registry

One of the keys to understanding adrenoleukodystrophy is the ability to include large numbers of patients and their families from around the world. 

The Leukodystrophy Center at the University of Minnesota is uniquely positioned to answer important questions about ALD related to biomarkers, imaging, the initiation of disease, neuropsychology, oxidative stress, and possible genotype-phenotype correlations.

Our goal is to assemble an even larger resource of clinical and biological data from families affected by ALD to help us understand the natural history and outcomes of disease.

Adrenoleukodystrophy Comprehensive Clinic

Our Adrenoleukodystrophy Comprehensive Clinic is a multidisciplinary team approach that ensures the care and monitoring we provide best meets the unique needs of each patient and family. 

The University of Minnesota is the largest center in the world in the assessment and treatment of boys with cerebral adrenoleukodystrophy. We have a commitment to ALD patients and their families to achieve the best outcomes, and to do so as safely as possible. The availability of newborn screening will prove extremely important in the identification of patients at risk, and in minimizing the long-term effects of their disease. This can best be achieved through the partnering of the relevant subspecialists caring for those with ALD in a comprehensive clinic structure, which we believe is the first of its kind.

Our ALD Comprehensive Clinic is located in the Journey Clinic. Please contact the Leukodystrophy Center (leukodystrophy@lists.umn.edu).