Clinical and Biochemical Characteristics of
Congenital Disorder of Glycosylation
Type Ic, the First Recognized Endoplasmic
Reticulum Defect in N-Glycan Synthesis
S. Gru¨newald, MD,*² T. Imbach, MD,‡ K. Huijben,§ M. E. Rubio-Gozalbo, MD,
i
A. Verrips, MD,
i
J. B. C. de Klerk, MD,¶ H. Stroink, MD,¶ J. F. de Rijk-van Andel, MD,# J. L. K. Van Hove, MD, PhD,**
U. Wendel, MD, PhD,* G. Matthijs, PhD,² T. Hennet, PhD,‡ J. Jaeken, MD, PhD,**
and R. A. Wevers, PhD§
We report on 8 patients with a recently described novel subtype of congenital disorder of glycosylation type Ic (CDG-Ic).
Their clinical presentation was mainly neurological with developmental retardation, muscular hypotonia, and epilepsy.
Several symptoms commonly seen in CDG-Ia such as inverted nipples, abnormal fat distribution, and cerebellar hyp-
oplasia were not observed. The clinical course is milder overall, with a better neurological outcome, than in CDG-Ia. The
isoelectric focusing pattern of serum transferrin in CDG-Ia and CDG-Ic is indistinguishable. Interestingly, b-trace pro-
tein in cerebrospinal fluid derived from immunoblot analysis of the brain showed a less pronounced hypoglycosylation
pattern in CDG-Ic patients than in CDG-Ia patients. Analysis of lipid-linked oligosaccharides revealed an accumulation
of Man
9
GlcNAc
2
intermediates due to dolichol pyrophosphate–Man
9
GlcNAc
2
a-1,3 glucosyltransferase deficiency. All
patients were homozygous for an A333V mutation.
Gru¨newald S, Imbach T, Huijben K, Rubio-Gozalbo ME, Verrips A, de Klerk JBC, Stroink H,
de Rijk-van Andel JF, Van Hove JLK, Wendel U, Matthijs G, Hennet T, Jaeken J, Wevers RA. Clinical and
biochemical characteristics of congenital disorder of glycosylation type Ic, the first recognized
endoplasmic reticulum defect in N-glycan synthesis. Ann Neurol 2000;47:776 –781
In 1980, Jaeken and co-workers
1
described monozy-
gotic twins with developmental retardation and several
glycoprotein abnormalities. This observation initiated
the delineation of a rapidly growing group of genetic
disorders caused by defects in the synthesis or process-
ing of N-glycans.
2
These congenital disorders of glyco-
sylation (CDGs), formerly known as carbohydrate-
deficient glycoprotein syndrome, present with variable
clinical symptoms. Isoelectric focusing (IEF) of serum
transferrin is the commonly used diagnostic test. The
most frequently observed IEF pattern is characterized
by an increase in the a- and disialotransferrin bands
(type I).
3
Most CDG-I cases result from phosphoman-
nomutase (PMM) 2 deficiency (CDG-Ia).
4–6
The
common features of CDG-Ia patients are moderate to
severe impairment of neurological function and vari-
able dysmorphology.
7,8
More recently, patients with a
mainly hepatointestinal presentation caused by a de-
ficiency of phosphomannose isomerase (PMI) have
been described (CDG-Ib).
9,10 –12
To date, 5 cases have
been reported with a typical CDG-I transferrin IEF
pattern due to a deficiency of the endoplasmic reticulum–
localized a-1,3 glucosyltransferase (Fig 1).
13,14
The
molecular genetic basis of CDG-Ic has been described
by Imbach and colleagues.
15
In this report, we review
its clinical and biochemical characteristics in 8 chil-
dren and compare the clinical features with those of
CDG-Ia.
Patients and Methods
Clinical Evaluation
Eight children were studied (5 boys and 3 girls), ranging in
age from 1.6 to 10.10 years (mean, 5.2 years). Four Dutch
children, a pair of monozygous twins and 2 other siblings,
From the *Department of Pediatrics, Heinrich-Heine University
Du¨sseldorf, Germany; ²Center for Human Genetics, University of
Leuven, and **Department of Pediatrics, University Hospital Gas-
thuisberg, Leuven, Belgium; ‡Institute of Physiology, University of
Zurich, Switzerland; §Laboratory of Pediatrics and Neurology, and
i
Department of Metabolic Diseases and Department of Pediatric
Neurology, University Hospital Nijmegen, Nijmegen, ¶Sophia Chil-
dren’s Hospital, Rotterdam, and #Department of Neurology, Igna-
tius Hospital, Breda, The Netherlands.
Received Nov 16, 1999, and in revised form Feb 7, 2000. Accepted
for publication Feb 11, 2000.
Address correspondence to Dr Wevers, University Hospital Nijme-
gen, Laboratory of Pediatrics and Neurology, Institute of Neurol-
ogy, PO Box 9101, NL-6500 HB Nijmegen, The Netherlands.
776 Copyright © 2000 by the American Neurological Association