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Adrenoleukodystrophy (ALD) is an X-linked disorder with several phenotypes ranging from childhood to adulthood. The objective of ALD Connect is to create a patient-centered clinical research network for ALD allowing researchers to conduct patient-centered comparative effectiveness research studies of mutual interest. The primary goal of this network is to allow clinicians to compare patient and/or site outcomes against the averages calculated from the entire dataset, enabling the rapid identification of important trends.
As part of this overall goal, the University of Minnesota “ALD Connect” initiated study will focus on the following:
- Determining the natural history and genotype-phenotype correlations of disease causing mutations in cerebral form of ALD and the adult adrenomyeloneuropathy variant as well as other forms of ALD.
- Determining the capability of the newly developed "the Minimal Dataset" to measure impairment and perform longitudinal measurements in patients with multiple forms of ALD over a five year window.
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