Saves the questions and what to expect into your notes, next to the visit they belong to.
Keep this study
Lead
Masonic Cancer Center, University of Minnesota
Age
1–5
Sex
MALE
Healthy volunteers
Not accepted
You may be eligible if
Boys with confirmed adrenoleukodystrophy, as determined by very long chain fatty acid (VLCFA) analysis and/or genotyping. Genotyping is not necessary for diagnosis.
Between 1 and 5 years of age, inclusive at the time of consent.
Able to undergo a sedation
English as primary language of the household, to maximize consistency of the neuropsychological/developmental testing.
Voluntary written parental/guardian consent
You may not be if
Evidence of cerebral disease at time of enrollment - patients over 3 years of age must have an MRI within 4 months of signing consent to confirm that there is no evidence of cerebral disease
Inability or unwillingness to travel to the University of Minnesota once a year for the duration of the study
Evidence of cerebral disease by standard T2/FLAIR MRI. If a subject develops cerebral ALD during the study, they will come off study, as it is anticipated that they would be considered for transplantation.
Clareo Health | Early Diagnosis Of Childhood Cerebral ALD
