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Long-term developmental progression in infants and young children taking sapropterin for phenylketonuria: a two-year analysis of safety and efficacy.
[phenylketonuria]
Purpose
:
Sapropterin
is
an
oral
synthetic
formulation
of
tetrahydrobiopterin
prescribed
as
adjunctive
therapy
for
phenylketonuria
.
The
efficacy
of
sapropterin
in
reducing
blood
phenylalanine
levels
has
been
demonstrated
in
clinical
studies
of
individuals
with
phenylketonuria
older
than
4
years
of
age
.
Its
effect
on
neurocognitive
functioning
in
younger
children
has
not
been
examined
.
Methods
:
A
2
-
year
interim
analysis
of
blood
phenylalanine
levels
,
prescribed
dietary
phenylalanine
intake
,
and
neurocognitive
functioning
was
performed
in
children
who
started
receiving
sapropterin
at
0
-
6
years
of
age
and
responded
with
a
≥
30
%
mean
blood
phenylalanine
reduction
.
Children
were
evaluated
at
baseline
and
2
-
year
follow-up
.
Results
:
Sapropterin
had
a
favorable
safety
profile
and
lowered
blood
phenylalanine
levels
with
increased
prescribed
dietary
phenylalanine
intakes
.
Mean
full-scale
intelligence
quotient
was
103
 
±
 
12
at
baseline
and
104
 
±
 
10
at
2
-
year
follow-up
(
P
=
0
.
50
,
paired
t-test
,
n
=
25
)
.
For
children
younger
than
30
months
of
age
,
the
cognitive
composite
score
from
the
Bayley
Scales
of
Infant
and
Toddler
Development
,
Third
Edition
,
remained
within
the
average
range
.
Conclusion
:
Sapropterin
had
a
favorable
safety
profile
,
was
effective
in
lowering
blood
phenylalanine
levels
while
clinically
requiring
dietary
adjustment
,
resulting
in
increased
phenylalanine
intake
,
and
preserved
neurocognitive
performance
in
children
who
started
therapy
between
0
and
6
years
of
age
.
Genet
Med
advance
online
publication
18
September
2014
Genetics
in
Medicine
(
2014
)
;
doi
:
10
.
1038
/
gim
.
2014
.
109
.
Diseases
Validation
Diseases presenting
"prescribed dietary phenylalanine intake"
symptom
phenylketonuria
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