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breakdown by removing 

1,4glucosyl residues from the outer branches of glycogen with

liberation of glucose-1-phosphate. 

2.

GSDV is commonly caused by either a nonsense mutation which results in a 

normal argi-

nine 

nonsense

at position 49 (R49X) causing a premature STOP codon (90% of cases in

European and US populations) or a missense mutation which results in a 

normal

glycine

serine

substitution at position 204 (G204S; 10% of cases in European and US

populations).

3. Prevalence.

The prevalence of GSDV is 1/100,000 births.

4. Clinical features include:

exercise-induced muscle cramps and pain, “second wind” phe-

nomenon with relief of myalgia and fatigue after a few minutes of rest, episodes of myo-
globinuria, increased resting basal serum creatine kinase (CK) activity, onset typically
occurs around 20 to 30 years of age; clumsiness, lethargy, slow movement, and laziness in
preadolescents.

G. Other Glycogen Storage Diseases.

These include: glycogen storage disease type II (GSDII;

Pompe); glycogen storage disease type IIIa (GSDIIIa; Cori); glycogen storage disease type IV
(GSDIV; Andersen); glycogen storage disease type VI (GSDVI; Hers); and glycogen storage
disease type VII (GSDVII; Tarui).

III. METABOLIC GENETIC DISORDERS INVOLVING AMINO 

ACID PATHWAYS

A. Phenylalanine Hydroxylase (PAH) Deficiency (or PKU).

1.

PAH deficiency is an autosomal recessive genetic disorder caused by a mutation in the

PAH gene

on 

chromosome 12q23.2

for 

phenylalanine hydroxylase

which catalyzes the reac-

tion phenylalanine 

tyrosine. 

2.

PAH deficiency is caused by missense (most common; 62% of cases); small deletion (13%
of cases); RNA splicing (11% of cases); silent (6% cases); nonsense (5% of cases); or inser-
tion (2% of cases) mutations. 

3.

PAH deficiency results in an intolerance to the dietary intake of phenylalanine (an essen-
tial amino acid). This produces a variability in metabolic phenotypes including 

classic

phenylketonuria (PKU), non-PKU hyperphenylalaninemia

,

and 

variant PKU

.

This variability in

metabolic phenotypes is caused primarily by different mutations in the PAH gene that
result in variations in the kinetics of phenylalanine uptake, permeability of the
blood–brain barrier, and protein folding. 

4.

Classic PKU is associated with the complete absence of PAH and is the most severe of the
three types of PAH deficiency. 

5. Prevalence.

The prevalence of PAH deficiency is 1/10,000 births in the Caucasian popula-

tion and 1/200,000 in the Ashkenazi Jewish population. Since the advent of universal new-
born screening, symptomatic classic PKU is rarely seen. 

6. Clinical features of classic PKU include:

no physical signs are apparent in neonates with

PAH deficiency; diagnosis is based on detection of elevated plasma phenylalanine con-
centration (

1,000 umol/L for classic PKU) and normal BH

4

cofactor metabolism; a

dietary phenylalanine tolerance of 

500 mg/day; untreated children with classic PKU

show impaired brain development, microcephaly, epilepsy, severe mental retardation,
behavioral problems, depression, anxiety, musty body odor, and skin conditions like
eczema.

B. Hereditary Tyrosinemia Type I (TYRI). 

1. TYRI

is an autosomal recessive genetic disorder caused by a mutation in the 

FAH gene

on

chromosome 15q23-q25

for 

fumarylacetoacetate hydrolase

,

which catalyzes the reaction

fumarylacetoacetic acid 

fumarate 

 acetoacetate.

2. TYRI

is caused by either a missense mutation, which results in a 

normal proline 

S

S

leucine

substitution at position 261 (P261L) or RNA splicing mutations. The P261L mutation

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Genetics of Metabolism

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accounts for 100% of cases in the Ashkenazi Jewish population. The P261L and some RNA
splicing mutations account for 60% of cases in the US population. 

3. Prevalence.

The prevalence of TYRI is 1/120,000 births. 

4. Clinical features include:

diagnosis is based on detection of elevated plasma succinylace-

tone concentration; elevated plasma tyrosine, methionine, and phenylalanine concentra-
tions; elevated urinary tyrosine metabolite (e.g., hydroxyphenylpyruvate) concentration;
elevated urinary 

-aminolevulinic acid; cabbage-like odor; untreated children with HTI

show severe liver dysfunction, renal tubular dysfunction, growth failure, and rickets. 

C. Maple Syrup Urine Disease (MSUD).

1.

MSUD is an autosomal recessive genetic disorder cause by 

60 different mutations in

either the 

BCKDHA gene

on 

chromosome 19q13.1-q13.2

for the 

E1

subunit of the branched-

chain ketoacid dehydrogenase complex (BCKD),

the 

BCKDHB gene

on 

chromosome 6q14

for

the 

E1ß subunit of BCKD,

or the 

DBT gene

on 

chromosome 1p31

for the 

E2 subunit of BCKD 

all

of which catalyze the second step in the degradation of branched-chain amino acids (e.g.,
leucine, isoleucine, and valine). 

2.

The BCKD enzyme is an enzyme complex found in the mitochondria. 

3. Prevalence.

The prevalence of MSUD is 1/185,000 births. 

4. Clinical features include:

untreated children with MSUD show maple syrup odor in ceru-

men 12 to 24 hours after birth, elevated plasma branched-chain amino acid concentra-
tion, ketonuria, irritability, poor feeding by 2 to 3 days of age, deepening encephalopathy
including lethargy, intermittent apnea, opisthotonus, and stereotyped movements like
“fencing” and “bicycling” by 4 to 5 days of age; acute leucine intoxication (leucinosis)
associated with neurological deterioration due to the ability of leucine to interfere with
the transport of other large neutral amino acids across the blood–brain barrier, thereby
reducing the amino acid supply to the brain. 

IV. METABOLIC GENETIC DISORDERS INVOLVING LIPID PATHWAYS

A. Medium-Chain Acyl-coenzyme A Dehydrogenase (MCAD) Deficiency. 

1.

MCAD deficiency is an autosomal recessive genetic disorder caused by 

45 different

mutations in the 

ACADM gene

on 

chromosome 1p31

for 

medium-chain acyl-coenzyme A

dehydrogenase (MCAD) 

which catalyzes the initial dehydrogenation of acyl-CoAs with a

fatty acid chain length of 4 to 12 carbon atoms. 

2.

The ACADM gene is a nuclear gene that codes for MCAD enzyme, which is active in the
mitochondria and part of the mitochondrial fatty acid ß-oxidation pathway. A defect in
MCAD leads to an accumulation of medium-chain fatty acids, which are further metabo-
lized to glycine-esters, carnitine-esters, and dicarboxylic acids (all of which are detectable
in blood, urine, and bile).

3.

The mitochondrial fatty acid 

-oxidation pathway normally fuels hepatic ketogenesis,

which is a major source of energy when hepatic glycogen stores are depleted during pro-
longed fasting or high energy demands.

4.

MCAD deficiency is caused by a missense mutation which results in a 

normal lysine 

S

S

glutamate

substitution at position 304 (K304E) prevalent in the Northern European popu-

lation.

5. Prevalence.

The prevalence of MCAD is 1/15,700 births in the US population. MCAD is

especially prevalent in Caucasians of Northern European descent. 

6. Clinical features include:

hyperketotic hypoglycemia, vomiting, and lethargy triggered by

either a common illness (e.g., viral gastrointestinal or upper respiratory tract infections)
or prolonged fasting (e.g., weaning the infant from nighttime feedings) which may quickly
progress to coma and death; hepatomegaly and acute liver disease; children are normal at
birth and present between 3 and 24 months of age; later presentation into adulthood is
possible.

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B. Smith-Lemli-Opitz (SLO) Syndrome.

1.

SLO syndrome is an autosomal recessive genetic disorder caused by 

70 different

mutations in the 

DHCR7 gene

on 

chromosome 11q12-q13

for 

7-dehydrocholesterol reduc-

tase

which catalyzes the last step in cholesterol biosynthesis 7-dehydrocholesterol 

cholesterol.

2.

SLO syndrome is commonly caused either by a missense mutation which results in a 

nor-

mal threonine 

methionine

substitution at position 93 (T93M), a nonsense mutation

which results in a 

normal tryptophan 

S

S

nonsense

at position 151 (W151X) causing a pre-

mature STOP codon, or a intron 8 splice acceptor mutation, all of which account for 

50%

of all cases. 

3. Prevalence.

The prevalence of SLO is 1/20,000 to 40,000 births. 

4. Clinical features include:

prenatal and postnatal growth retardation, microcephaly, mod-

erate to severe mental retardation, cleft palate, cardiac defects, underdeveloped external
genitalia and hypospadias in males, postaxial polydactyly, Y-shaped 2 to 3 toe syndactyly,
downslanting palpebral fissures, epicanthal folds, anteverted nares, and micrognathia.

C. Familial Hypercholesterolemia (FH).

1.

FH is an autosomal dominant genetic disorder caused by 

400 different mutations in the

LDLR gene

on 

chromosome 19p13.1-13.3

for the 

low-density ipoprotein receptor

which binds

LDL and delivers LDL into the cell cytoplasm. 

2.

Mutations in the LDLR gene are grouped into 6 classes:

a. Class 1 

mutations prevent LDLR synthesis.

b. Class 2 

mutations prevent LDLR transport to the cell membrane.

c. Class 3

mutations prevent LDL binding to LDLR.

d. Class 4

mutations prevent LDL internalization into the cell cytoplasm by coated pits.

e. Class 5

mutations prevent LDLR recycling back to the cell membrane after LDL 

 LDLR

dissociation.

f. Class 6 

mutations prevent LDLR targeting to the apical membrane adjacent to the

blood capillaries. 

3.

Other genes associated with FH include:

a.

FH is also an autosomal dominant genetic disorder caused by a mutation in the 

APOB

gene

on 

chromosome 2p23-p24

for 

apolipoprotein B-100

which is a component of LDL and

the ligand for LDLR. The prevalence of APOB gene homozygotes is 1/1,000,000 births.
The prevalence of APOB gene heterozygotes is 1/1,000 births in Caucasians of
European descent.

b.

FH is also an autosomal dominant genetic disorder caused by a missense, gain-of-
function mutations in the 

PCSK9 gene

on 

chromosome 1p32-p34.1

for 

proprotein conver-

tase subtilisin/kexin type 9.

The increased PCSK9 protease activity degrades LDLR lead-

ing to hypercholesterolemia. This type of FH is very rare.

c.

The 

Tyr142Stop

and 

Cys679Stop 

nonsense mutations in the 

PCSK9 gene

are loss-of-func-

tion mutations. The decreased PCSK9 protease activity has been associated with a 40%
reduction in LDL cholesterol (i.e., 

hypocholesterolemia

) and a 90% reduced risk of coro-

nary artery disease in 2.6% of the African American population. 

d.

The 

Arg46Leu

mutation in the 

PCSK9 gene

is a loss-of-function mutation. The decreased

PCSK9 protease activity has been associated with a 15% reduction in LDL cholesterol
(i.e., 

hypocholesterolemia

) and 50% reduced risk of coronary artery disease in 3.2% of

whites in the US population. 

4. Prevalence.

The prevalence of LDLR gene homozygotes is 1/1,000,000 births. The preva-

lence of LDLR gene heterozygotes is 1/500 births. Most cases of hypercholesterolemia and
hyperlipoproteinemia in the general population are of multifactorial origin. 

5. Clinical features include:

premature heart disease as a result of atheromas (deposits of

LDL-derived cholesterol in the coronary arteries); xanthomas (cholesterol deposits in the
skin and tendons); arcus lipoides (deposits of cholesterol around the cornea of the eye);
homozygote and heterozygote phenotypes are known; homozygotes develop severe
symptoms early in life and rarely live past 30 years of age; heterozygotes have plasma cho-
lesterol level twice that of normal. 

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128

BRS Genetics

V. METABOLIC GENETIC DISORDERS INVOLVING THE UREA 

CYCLE PATHWAY

A.

The urea cycle produces the amino acid arginine (this is the only source of endogenous argi-
nine) and clears waste nitrogen resulting from the metabolism of proteins and dietary intake
(this is the only pathway for waste nitrogen clearance). The waste nitrogen is converted to
ammonia (NH

4

) and transported to the liver.

B.

The severity of these disorders is influenced by the position of the defective enzyme in the
urea cycle pathway and the severity of the enzyme defect (partial activity vs. absent activity). 

C.

Because the urea cycle is the only pathway for waste nitrogen clearance, clinical symptoms
develop very rapidly. 

D. Prevalence.

The prevalence of urea cycle disorders is 1/30,000 births. 

E. Clinical features include:

infants initially appear normal but then rapidly develop hyperam-

monemia, cerebral edema, lethargy, anorexia, hyperventilation or hypoventilation,
hypothermia, seizures, neurologic posturing, and coma; in infants with partial enzyme defi-
ciencies, the symptoms may be delayed for months or years, the symptoms are more subtle,
the hyperammonemia is less severe, and ammonia accumulation can be triggered by illness
or stress throughout life. 

F.

Metabolic genetic disorders involving the urea cycle pathway include: 

1. Ornithine transcarbamylase (OTC) deficiency.

a.

OTC deficiency is an X-linked recessive genetic disorder caused by a mutation in the

OTC gene

on 

chromosome Xp21.1

for 

ornithine transcarbamylase

.

b.

OTC deficiency along with CPSI deficiency and NAGS deficiency are the most severe
types of urea cycle disorders. Newborns with OTC deficiency rapidly develop hyperam-
monemia and these children are always at risk for repeated bouts of hyperammone-
mia. 

c.

OTC can be distinguished from carbamoylphosphate synthetase (CPSI) deficiency by
elevated levels of 

orotic acid

in OTC individuals. 

d.

15% of female carriers develop hyperammonemia during their lifetime and many
require chronic medical management. 

2. Other urea cycle disorders.

These include: carbamoylphosphate  synthetase I (CPSI) defi-

ciency; argininosuccinic acid synthetase (ASS) deficiency (or citrullinemia type I); argini-
nosuccinic acid lyase (ASL) deficiency (or argininosuccinic aciduria); arginase (ARG) defi-
ciency (or hyperargininemia); and N-acetyl glutamate synthetase (NAGS) deficiency. 

VI. METABOLIC GENETIC DISORDERS INVOLVING 

TRANSPORT PATHWAYS

A. Menkes Disease (MND). 

1.

MND is an X-linked recessive genetic disorder caused by various mutations in the 

ATP7A

gene

on 

chromosome Xq12-q13

for 

Copper-Transporting ATPase 1,

which is a P-type ATPase

that transports copper across cell membranes thereby controlling copper homeostasis.

2.

MND is commonly caused by small insertion and deletion mutations (35%), nonsense
mutations (20%); RNA splicing mutations (15%), and missense mutations (8%).

3.

These mutations result in low serum concentration of copper (0 to 60 

g/dL vs. 70 to 150

g/dL normal), low serum concentration of ceruloplasmin (30 to 150 mg/dL vs. 200 to 450
mg/dL normal), a decreased intestinal absorption of copper, an accumulation of copper

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in some tissues, and a decreased activity of copper-dependent enzymes (e.g., dopamine
ß-hydroxylase critical for catecholamine synthesis or lysyl oxidase).

4. Prevalence.

The prevalence of MND is 1/1,000,000 births. 

5. Clinical features include:

infants initially appear normal up to 2 to 3 months of age but

then develop hypotonia; seizures; failure to thrive; loss of developmental milestones;
changes in hair (short, coarse, twisted, lightly pigmented, “steel wool” appearance); jowly
facial appearance with sagging cheeks; temperature instability; hypoglycemia; urinary
bladder diverticulae; and gastric polyps. Without early treatment with parenteral copper,
MND progresses to severe neurodegeneration and death by 7 months 

3 years of age. 

B. Wilson Disease (WND).

1.

WND is an autosomal recessive genetic disorder caused by 

260 mutations in the 

ATP7B

gene

on chromosome 

13q14.3-q21.1 

for 

Copper-Transporting ATPase 2,

which is a P type

ATPase expressed mainly in the kidney and liver that plays a key role in incorporating cop-
per into ceruloplasmin and in the release of copper into bile. 

2.

WND is commonly caused by either a missense mutation which results in a 

normal histi-

dine 

S

S

glutamine 

substitution at position 1069 (H1069Q), a missense mutation which

results in a 

normal arginine 

S

S

leucine

substitution at position 778 (R778L), or a 

15 base pair

deletion

in the promoter region. 

3.

The H1069Q mutation accounts for 45% of cases in the European population. The R778L
mutation accounts for 60% of cases in the Asian population. The 15 base pair deletion
mutation is common in the Sardinian population. 

4.

These mutations result in 

high hepatic concentration of copper

(

250 g/g dry weight vs.

55 g/g dry weight normal); high urinary excretion of copper (0.6 umol/24 hours); and

damage of various tissues due to excessive accumulation of copper

.

5. Prevalence.

The prevalence of WND is 1/30,000 in most populations. The prevalence is

1/10,000 in Chinese and Japanese populations. 

6. Clinical features include:

symptoms occur in individuals from 3 to 50 years of age; recurrent

jaundice; hepatitislike illness; fulminant hepatic failure; tremors; poor coordination; loss
of fine motor control; chorea; masklike facies; rigidity; gait disturbance; depression; neu-
rotic behaviors; 

Kayser-Fleischer rings

(deposition of copper in Descemet’s membrane of

the cornea); blue lunulae of the fingernails; and high degree of copper storage in the body. 

C. HFE-Associated Hereditary Hemochromatosis (HHH).

1.

HHH is an autosomal recessive genetic disorder caused by 

28 different mutations in

the 

HFE gene

on 

chromosome 6p21.3

for 

hereditary hemochromatosis protein

,

which is a cell

surface protein, expressed as a heterodimer with ß

2

-microglobulin, binds the transfer-

rin receptor 1, and reduces cellular iron uptake although the exact mechanism is
unknown.

2.

HHH is most commonly caused by two missense mutations that result in a 

normal cys-

teine 

S

S

tyrosine

substitution at position 282 (C282Y), resulting in decreased cell surface

expression or that result in a 

normal histidine 

S

S

asparagine 

substitution at position 63

(H63D), resulting in pH changes that affects binding to the transferrin receptor 1. 

3.

87% of HHH affected individuals in the European population are homozygous for the

C282Y mutation or are 

compound heterozygous 

(i.e., two different mutations at the same

gene locus) for the C282Y and H63D mutations. 

4.

These mutations result in elevated transferrin-iron saturation, elevated serum ferritin con-
centration, and hepatic iron overload assessed by 

Prussian blue

staining of a liver biopsy. 

5.

If a person has HHH decides to have a child, then the carrier risk factor becomes impor-
tant. The risk that a partner of European descent is a heterozygote (Hh) is 11% (1 out of 9
individuals), due the high carrier rate in the general European population for HHH. 

6. Prevalence.

The prevalence of HHH is 1/200 to 500 births. 

7. Clinical features include:

excessive storage of iron in the liver, heart, skin, pancreas, joints,

and testes; abdominal pain, weakness, lethargy, weight loss, and hepatic fibrosis; without
therapy, symptoms appear in males at 40 to 60 years of age and in females after menopause.

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