#257200 ICD+
  • ICD10CM: E75.240,
  • SNOMEDCT: 52165006
ICD10CM: E75.240, SNOMEDCT: 52165006
NIEMANN-PICK DISEASE, TYPE A

Alternative titles; symbols
SPHINGOMYELIN LIPIDOSIS
SPHINGOMYELINASE DEFICIENCY

Other entities represented in this entry:
NIEMANN-PICK DISEASE, INTERMEDIATE, PROTRACTED NEUROVISCERAL, INCLUDED

Phenotype Gene Relationships
Location Phenotype Phenotype
MIM number
Gene/Locus Gene/Locus
MIM number
11p15.4 Niemann-Pick disease, type A 257200 SMPD1 607608


TEXT
A number sign (#) is used with this entry because Niemann-Pick disease type A is caused by mutation in the sphingomyelin phosphodiesterase-1 gene (SMPD1; 607608), which encodes acid sphingomyelinase (ASM).

Niemann-Pick disease type B (607616) is an allelic disorder characterized by visceral involvement only and survival into adulthood.

Description
Niemann-Pick disease types A and B are caused by an inherited deficiency of acid sphingomyelinase activity. The clinical phenotype ranges from a severe infantile form with neurologic degeneration resulting in death usually by 3 years of age (type A) to a later-onset nonneurologic form (type B) that is compatible with survival into adulthood. Since intermediate cases also have been reported, the disease is best regarded a single entity with a clinical spectrum (summary by Schuchman, 2007).

Knudson and Kaplan (1962) suggested that 3 types of the disorder can be distinguished: infantile cerebral, juvenile cerebral, and noncerebral. Later, 5 forms of Niemann-Pick disease were distinguished. Four were delineated by Crocker (1961): the classical infantile form (type A), the visceral form (type B), the subacute or juvenile form (type C; 257220), and the Nova Scotian variant (type D; see 257220). The fifth, the adult form (type E; see 607616), was described by Terry et al. (1954) and Lynn and Terry (1964). Schneider et al. (1978) used the designation type F (see 607616) for a form characterized in 2 patients by a thermolabile enzyme. Most patients fall into Crocker's group A, with death before age 3 years.

Schuchman (2007) provided a detailed review of Niemann-Pick disease type A, including clinical management.

Clinical Features
In Niemann-Pick disease, lipid, mainly sphingomyelin, accumulates in reticuloendothelial and other cell types throughout the body. The accumulation in ganglion cells of the central nervous system leads to cell death. Crocker and Farber (1958) presented a detailed clinical and pathologic account of 18 patients with Niemann-Pick disease. Persistent early jaundice, enlarging abdomen, and poor nutritional and developmental progress were the most common initial complaints. Hepatosplenomegaly, retarded physical and mental growth and severe neurologic disturbances, including hypotonia, rigidity, and mental retardation, were features. Symptoms usually developed by 6 months and death occurred by 3 years of age. Crocker and Farber (1958), Forsythe et al. (1959), and others suggested that the biologic behavior can be widely variable.

Wiedemann et al. (1965) found large storage cells in the bone marrow of both clinically normal parents of a sibship with several affected children. The parents were first cousins. The authors noted that about 40% of cases were Jewish. Heterogeneity was emphasized by Lowden et al. (1967) who described non-Jewish sibs with both clinical and chemical differences from the usual disease.

In addition to a cherry red spot, Walton et al. (1978) found corneal opacification and brown discoloration of the anterior lens capsule in all of 4 infants with type A Niemann-Pick disease who were studied in their first year.

Barness et al. (1987) presented a well-studied case of Niemann-Pick disease type A at a clinicopathologic conference.

McGovern et al. (2006) reported the natural history of 10 unrelated patients with type A Niemann-Pick disease. All affected infants had a normal neonatal course and early development. The presenting symptom in all patients was hepatosplenomegaly, and the median age at diagnosis was 6 months. Median developmental age for all 10 did not progress beyond 12 months for developmental milestones. None achieved independent sitting, crawling, or walking; most had progressive hypotonia with loss of deep tendon reflexes. All patients had cherry red spots by age 12 months. Nonneurologic symptoms included vomiting, failure to thrive, respiratory infections, irritability, and sleep disturbances. The median time from diagnosis to death was 21 months. McGovern et al. (2006) concluded that type A Niemann-Pick disease shows a homogeneous, relentless, neurodegenerative clinical course with death within 3 years of onset.

Clinical Variability

Pavlu-Pereira et al. (2005) described 25 Czech and Slovak patients with acid sphingomyelinase deficiency. Five could be clearly classified as having Niemann-Pick disease type A and 4 as having type B. However, 16 (64%) of 25 patients showed variable features, which the authors considered to be an intermediate form of the disease. Twelve of these patients had a combination of visceral storage with a protracted course of neurologic involvement and a general protracted disease course. Three patients had prominent visceral involvement with a rapid course and discrete neuronal storage observed at autopsy. One patient had a rapidly fatal course of visceral involvement without neuronal involvement; he died at age 8 years. The Q292K mutation (607608.0015) was strongly associated with a protracted neurovisceral phenotype in 10 of 12 patients. Pavlu-Pereira et al. (2005) concluded that a phenotypic continuum exists between the basic neurovisceral (type A) and purely visceral (type B) forms of Niemann-Pick disease, and that the intermediate type encompasses a cluster of variants combining clinical features of both types A and B.

Pathogenesis
In the classic infantile type (type A), Brady et al. (1966) demonstrated that the biochemical defect is deficient activity of the enzyme that catalyzes cleavage of sphingomyelin to phosphorylcholine and ceramide. Uhlendorf et al. (1967) found the metabolic defect in cell culture. Increased sphingomyelin was demonstrated in cells from bone marrow, skin, and amnion; the last makes prenatal diagnosis possible.

Schneider and Kennedy (1967) found that sphingomyelinase is deficient only in the infantile and visceral forms (type B).

Biochemical Features
Kirkegaard et al. (2010) showed that Hsp70 (140550) stabilizes lysosomes by binding to an endolysosomal anionic phospholipid bis(monoacylglycero)phosphate (BMP), an essential cofactor for lysosomal sphingomyelin metabolism. In acidic environments Hsp70 binds with high affinity and specificity to BMP, thereby facilitating the BMP binding and activity of acid sphingomyelinase (ASM). The inhibition of the Hsp70-BMP interaction by BMP antibodies or a point mutation in Hsp70 (trp90 to phe), as well as the pharmacologic and genetic inhibition of ASM, effectively reverted the Hsp70-mediated stabilization of lysosomes. Notably, the reduced ASM activity in cells from patients with Niemann-Pick disease A and B (607616), severe lysosomal storage disorders caused by mutations in the sphingomyelin phosphodiesterase-1 gene (SMPD1; 607616) encoding ASM, is also associated with a marked decrease in lysosomal stability, and this phenotype could be effectively corrected by treatment with recombinant Hsp70. Kirkegaard et al. (2010) concluded that, taken together, their data opened exciting possibilities for the development of new treatments for lysosomal storage disorders and cancer with compounds that enter the lysosomal lumen by the endocytic delivery pathway.

Molecular Genetics
Levran et al. (1991) identified a point mutation in the SMPD1 gene (607608.0001) in an Ashkenazi Jewish patient with type A Niemann-Pick disease. Takahashi et al. (1992) characterized 3 SMPD1 mutations (607608.0005-607608.0007) causing Niemann-Pick disease type A. Ida et al. (1996) identified 3 novel mutations in the SMPD1 gene in Japanese patients with type A and B Niemann-Pick disease.

Rodriguez-Pascau et al. (2009) identified 17 different mutations in the SMPD1 gene, including 10 novel mutations (see, e.g., A482E; 608607.0016 and Y467S; 608607.0017), in 19 Spanish patients and 2 patients from Maghreb in Northern Africa with Niemann-Pick disease type A (8 patients) or type B (13 patients). The most common mutations were R608del (607608.0002), found in 38% of alleles, and the A482E mutation, found in 9% of alleles. The R608del mutation was always found in patients with type B disease; the A482E and Y467S mutations were found in type A patients. Functional expression studies of the mutant proteins in COS-7 cells showed decreased enzyme activity.

Genotype/Phenotype Correlations
Takahashi et al. (1992) concluded that small deletions or nonsense mutations that result in truncated ASM polypeptide and missense mutations that render the enzyme noncatalytic cause type A Niemann-Pick disease, whereas missense mutations that produce a defective enzyme with residual catalytic activity cause a milder nonneuronopathic type B phenotype.

Population Genetics
Despite considerable uncertainty about the demographic history of Ashkenazi Jews and their ancestors, Slatkin (2004) considered available genetic data to be consistent with a founder effect resulting from a severe bottleneck in population size between 1100 A.D. and 1400 A.D. and an earlier bottleneck in 75 A.D., at the beginning of the Jewish Diaspora. He concluded that a founder effect can account for the relatively high frequency of alleles causing 4 different lysosomal storage disorders, including Niemann-Pick disease, Tay-Sachs disease (TSD; 272800), and Gaucher disease (230800), if the disease-associated alleles are recessive in their effects on reproductive fitness.

Animal Model
By homologous recombination in embryonic stem cells, Otterbach and Stoffel (1995) achieved targeted disruption of the SMPD1 gene in transgenic mice. Homozygous mice accumulated sphingomyelin extensively in the reticuloendothelial system of liver, spleen, bone marrow, and lung, as well as in the brain. Most strikingly, the ganglionic cell layer of Purkinje cells of the cerebellum degenerated completely, leading to severe impairment of neuromotor coordination. The picture resembled that of the neurovisceral form of Niemann-Pick disease (type A). Horinouchi et al. (1995) obtained similar results in Asm knockout mice.

See Also:
Brady (1966); Daloze et al. (1977); Elleder and Cihula (1983); Gal et al. (1975); Kampine et al. (1967); Miyawaki et al. (1986); Sakiyama et al. (1983); Wenger et al. (1980); Wenger et al. (1978)

REFERENCES
1. Barness, L. A., Wiederhold, S., Chandra, S., Odell, G. B., Shahidi, N. T., Gilbert, E. F. One-year-old infant with hepatosplenomegaly and developmental delay. Am. J. Med. Genet. 28: 411-431, 1987. [PubMed: 2447773, related citations] [Full Text: Pubget]

2. Brady, R. O. The sphingolipidoses. New Eng. J. Med. 275: 312-318, 1966. [PubMed: 5940695, related citations] [Full Text: Atypon, Pubget]

3. Brady, R. O., Kanfer, J. N., Mock, M. B., Fredrickson, D. S. The metabolism of sphingomyelin. II. Evidence of an enzymatic deficiency in Niemann-Pick disease. Proc. Nat. Acad. Sci. 55: 366-369, 1966. [PubMed: 5220952, related citations] [Full Text: Pubget]

4. Crocker, A. C. The cerebral defect in Tay-Sachs disease and Niemann-Pick disease. J. Neurochem. 7: 69-80, 1961. [PubMed: 13696518, related citations] [Full Text: Pubget]

5. Crocker, A. C., Farber, S. Niemann-Pick disease: a review of eighteen patients. Medicine 37: 1-95, 1958. [PubMed: 13516139, related citations] [Full Text: Pubget]

6. Daloze, P., Delvin, E. E., Glorieux, F. H., Corman, J. L., Bettez, P., Toussi, T. Replacement therapy for inherited enzyme deficiency: liver orthotopic transplantation in Niemann-Pick type A. Am. J. Med. Genet. 1: 229-239, 1977. [PubMed: 345809, related citations] [Full Text: Pubget]

7. Elleder, M., Cihula, J. Niemann-Pick disease (variation in the sphingomyelinase deficient group): neurovisceral phenotype (A) with an abnormally protracted clinical course and variable expression of neurological symptomatology in three siblings. Europ. J. Pediat. 140: 323-328, 1983. [PubMed: 6628453, related citations] [Full Text: Pubget]

8. Forsythe, W. I., McKeown, E. F., Neill, D. W. Three cases of Niemann-Pick's disease in children. Arch. Dis. Child. 34: 406-409, 1959. [PubMed: 13824052, related citations] [Full Text: Pubget]

9. Gal, A. E., Brady, R. O., Hibbert, S. R., Pentchev, P. G. A practical chromogenic procedure for the detection of homozygotes and heterozygous carriers of Niemann-Pick disease. New Eng. J. Med. 293: 632-636, 1975. [PubMed: 239343, related citations] [Full Text: Atypon, Pubget]

10. Horinouchi, K., Erlich, S., Perl, D. P., Ferlinz, K., Bisgaier, C. L., Sandhoff, K., Desnick, R. J., Stewart, C. L., Schuchman, E. H. Acid sphingomyelinase deficient mice: a model of types A and B Niemann-Pick disease. Nature Genet. 10: 288-293, 1995. [PubMed: 7670466, related citations] [Full Text: Nature Publishing Group, Pubget]

11. Ida, H., Rennert, O. M., Maekawa, K., Eto, Y. Identification of three novel mutations in the acid sphingomyelinase gene of Japanese patients with Niemann-Pick disease type A and B. Hum. Mutat. 7: 65-67, 1996. [PubMed: 8664904, related citations] [Full Text: John Wiley & Sons, Inc., Pubget]

12. Kampine, J. P., Brady, R. O., Kanfer, J. N. Diagnosis of Gaucher's disease and Niemann-Pick disease with small samples of venous blood. Science 155: 86-88, 1967. [PubMed: 6015567, related citations] [Full Text: HighWire Press, Pubget]

13. Kirkegaard, T., Roth, A. G., Petersen, N. H. T., Mahalka, A. K., Olsen, O. D., Moilanen, I., Zylicz, A., Knudsen, J., Sandhoff, K., Arenz, C., Kinnunen, P. K. J., Nylandsted, J., Jaattela, M. Hsp70 stabilizes lysosomes and reverts Niemann-Pick disease-associated lysosomal pathology. Nature 463: 549-553, 2010. [PubMed: 20111001, related citations] [Full Text: Nature Publishing Group, Pubget]

14. Knudson, A. G., Jr., Kaplan, W. D. Genetics of the sphingolipidoses.In: Aaronson, S. M.; Volk, B. W. : Cerebral Sphingolipidoses. A Symposium on Tay-Sachs Disease. New York: Academic Press (pub.) 1962. Pp. 395-411.

15. Levran, O., Desnick, R. J., Schuchman, E. H. Niemann-Pick disease: a frequent missense mutation in the acid sphingomyelinase gene of Ashkenazi Jewish type A and B patients. Proc. Nat. Acad. Sci. 88: 3748-3752, 1991. [PubMed: 2023926, related citations] [Full Text: HighWire Press, Pubget]

16. Lowden, J. A., Laramee, M. A., Wentworth, P. The subacute form of Niemann-Pick disease. Arch. Neurol. 17: 230-237, 1967. [PubMed: 6053566, related citations] [Full Text: HighWire Press, Pubget]

17. Lynn, R., Terry, R. D. Lipid histochemistry and electron microscopy in adult Niemann-Pick disease. Am. J. Med. 37: 987-994, 1964. [PubMed: 14246098, related citations] [Full Text: Pubget]

18. McGovern, M. M., Aron, A., Brodie, S. E., Desnick, R. J., Wasserstein, M. P. Natural history of type A Niemann-Pick disease: possible endpoints for therapeutic trials. Neurology 66: 228-232, 2006. [PubMed: 16434659, related citations] [Full Text: HighWire Press, Pubget]

19. Miyawaki, S., Yoshida, H., Mitsuoka, S., Enomoto, H., Ikehara, S. A mouse model for Niemann-Pick disease: influence of genetic background on disease expression in spm/spm mice. J. Hered. 77: 379-384, 1986. [PubMed: 3559164, related citations] [Full Text: HighWire Press, Pubget]

20. Otterbach, B., Stoffel, W. Acid sphingomyelinase-deficient mice mimic the neurovisceral form of human lysosomal storage disease (Niemann-Pick disease). Cell 81: 1053-1061, 1995. [PubMed: 7600574, related citations] [Full Text: Elsevier Science, Pubget]

21. Pavlu-Pereira, H., Asfaw, B., Poupetova, H., Ledvinova, J., Sikora, J., Vanier, M. T., Sandhoff, K., Zeman, J., Novotna, Z., Chudoba, D., Elleder, M. Acid sphinogomyelinase deficiency. Phenotype variability with prevalence of intermediate phenotype in a series of twenty-five Czech and Slovak patients. A multi-approach study. J. Inherit. Metab. Dis. 28: 203-227, 2005. [PubMed: 15877209, related citations] [Full Text: Springer, Pubget]

22. Rodriguez-Pascau, L., Gort, L., Schuchman, E. H., Vilagelui, L., Grinberg, D., Chabas, A. Identification and characterization of SMPD1 mutations causing Niemann-Pick types A and B in Spanish patients. Hum. Mutat. 30: 1117-1122, 2009. [PubMed: 19405096, related citations] [Full Text: John Wiley & Sons, Inc., Pubget]

23. Sakiyama, T., Kitagawa, T., Jhou, H., Miyawaki, S. Bone marrow transplantation for Niemann-Pick mice. J. Inherit. Metab. Dis. 6: 129-130, 1983. [PubMed: 6422146, related citations] [Full Text: Pubget]

24. Schneider, E. L., Pentchev, P. G., Hibbert, S. R., Sawitsky, A., Brady, R. O. A new form of Niemann-Pick disease characterized by temperature-labile sphingomyelinase. J. Med. Genet. 15: 370-374, 1978. [PubMed: 216805, related citations] [Full Text: HighWire Press, Pubget]

25. Schneider, P. B., Kennedy, E. P. Sphingomyelinase in normal human spleens and in spleens from subjects with Niemann-Pick disease. J. Lipid Res. 8: 202-209, 1967. [PubMed: 4962590, related citations] [Full Text: HighWire Press, Pubget]

26. Schuchman, E. H. The pathogenesis and treatment of acid sphingomyelinase-deficient Niemann-Pick disease. J. Inherit. Metab. Dis. 30: 654-663, 2007. [PubMed: 17632693, related citations] [Full Text: Springer, Pubget]

27. Slatkin, M. A population-genetic test of founder effects and implications for Ashkenazi Jewish diseases. Am. J. Hum. Genet. 75: 282-293, 2004. [PubMed: 15208782, related citations] [Full Text: Elsevier Science, Pubget]

28. Takahashi, T., Suchi, M., Desnick, R. J., Takada, G., Schuchman, E. H. Identification and expression of five mutations in the human acid sphingomyelinase gene causing types A and B Niemann-Pick disease: molecular evidence for genetic heterogeneity in the neuronopathic and non-neuronopathic forms. J. Biol. Chem. 267: 12552-12558, 1992. [PubMed: 1618760, related citations] [Full Text: HighWire Press, Pubget]

29. Terry, R. D., Sperry, W. M., Brodoff, B. Adult lipidosis resembling Niemann-Pick's disease. Am. J. Path. 30: 263-285, 1954. [PubMed: 13138710, related citations] [Full Text: Pubget]

30. Uhlendorf, B. W., Holtz, A. I., Mock, M. B., Fredrickson, D. S. Persistence of a metabolic defect in tissue cultures derived from patients with Niemann-Pick disease.In: Aronson, S. M.; Volk, B. W. : Inborn Disorders of Sphingolipid Metabolism. Oxford: Pergamon Press (pub.) 1967. Pp. 443-453.

31. Walton, D. S., Robb, R. M., Crocker, A. C. Ocular manifestations of group A Niemann-Pick disease. Am. J. Ophthal. 85: 174-180, 1978. [PubMed: 623187, related citations] [Full Text: Pubget]

32. Wenger, D. A., Sattler, M., Kudoh, T., Snyder, S. P., Kingston, R. S. Niemann-Pick disease: a genetic model in Siamese cats. Science 208: 1471-1473, 1980. [PubMed: 7189903, related citations] [Full Text: HighWire Press, Pubget]

33. Wenger, D. A., Wharton, C., Sattler, M., Clark, C. Niemann-Pick disease: prenatal diagnosis and studies of sphingomyelinase activities. Am. J. Med. Genet. 2: 345-356, 1978. [PubMed: 233699, related citations] [Full Text: Pubget]

34. Wiedemann, H. R., Gerken, H., Graucob, E., Hansen, H. G. Recognition of heterozygosity in sphingolipidoses. (Letter) Lancet 285: 1283 only, 1965. Note: Originally Volume I.

Contributors: Cassandra L. Kniffin - updated : 11/11/2009
Cassandra L. Kniffin - updated : 1/7/2009
Cassandra L. Kniffin - updated : 4/10/2006
Victor A. McKusick - updated : 8/17/2004
Cassandra L. Kniffin - reorganized : 3/13/2003
Victor A. McKusick - updated : 1/8/2003
Victor A. McKusick - updated : 4/29/2002
George E. Tiller - updated : 10/25/2000
Stylianos E. Antonarakis - updated : 1/16/1998
Creation Date: Victor A. McKusick : 6/4/1986
Edit History: alopez : 03/10/2010
wwang : 12/3/2009
ckniffin : 11/11/2009
terry : 6/12/2009
terry : 3/13/2009
carol : 2/3/2009
wwang : 1/21/2009
ckniffin : 1/7/2009
wwang : 4/19/2006
ckniffin : 4/10/2006
tkritzer : 8/17/2004
carol : 3/13/2003
ckniffin : 3/13/2003
ckniffin : 3/12/2003
ckniffin : 3/10/2003
cwells : 1/13/2003
terry : 1/8/2003
cwells : 5/28/2002
cwells : 5/16/2002
terry : 4/29/2002
mcapotos : 11/1/2000
mcapotos : 10/25/2000
alopez : 2/8/1999
alopez : 10/29/1998
alopez : 6/15/1998
carol : 1/16/1998
mark : 10/8/1997
mark : 9/29/1996
terry : 9/23/1996
mark : 1/31/1996
terry : 1/25/1996
terry : 7/18/1995
davew : 8/19/1994
jason : 7/18/1994
carol : 4/26/1994
mimadm : 3/11/1994