Long-Term Outcomes of Early Enzyme Replacement Therapy for Mucopolysaccharidosis IV: Clinical Case Studies of Two Siblings.

Morquio syndrome case report deficient N-acetylgalactosamine 6-sulfatase enzyme replacement therapy glycosaminoglycan mucopolysaccharidosis

Journal

Diagnostics (Basel, Switzerland)
ISSN: 2075-4418
Titre abrégé: Diagnostics (Basel)
Pays: Switzerland
ID NLM: 101658402

Informations de publication

Date de publication:
17 Feb 2020
Historique:
received: 20 11 2019
revised: 04 02 2020
accepted: 05 02 2020
entrez: 22 2 2020
pubmed: 23 2 2020
medline: 23 2 2020
Statut: epublish

Résumé

Enzyme replacement therapy (ERT) is one of the available therapies for mucopolysaccharidosis (MPS). This study presents a follow-up of two siblings with MPS IVA (Morquio A disease) that received ERT. Both siblings received weekly intravenous infusions of elosulfase alfa for 4.5 years. One sibling (patient 1, P1; male) started therapy at 54 months of age, and the other sibling (patient 2, P2; female) started at 11 months of age. ERT was well-tolerated. In comparison to P1, P2's growth curves deviated less from the norm. The orthopedic deformities of P1 were more severe than those of P2 and required several surgical corrections. P1's sleep test at 48 months revealed obstructive sleep apnea, while by the age of 102 months, parameters were normal. P2 never had sleep apnea. Only P1 demonstrated ear, nose, and throat clinical illnesses. In comparison to P1, P2's physical function was better maintained. In conclusion, ERT was safe in both patients during a 4.5-year follow-up. Although the typical characteristics of this disease were similar in both patients, P1 had a complex clinical course in comparison to P2, which influenced function and quality of life. Therefore, in order to make the most of ERT, it may be more beneficial when initiated at a relatively young age.

Identifiants

pubmed: 32079294
pii: diagnostics10020108
doi: 10.3390/diagnostics10020108
pmc: PMC7168314
pii:
doi:

Types de publication

Case Reports

Langues

eng

Commentaires et corrections

Type : ErratumIn

Déclaration de conflit d'intérêts

The authors declare no conflict of interest.

Références

Methods Enzymol. 1982;83:559-72
pubmed: 6808304
Am J Med Genet A. 2015 Jan;167A(1):11-25
pubmed: 25346323
J Hum Genet. 2019 Jul;64(7):625-635
pubmed: 31019230
J Pediatr. 2004 May;144(5):574-80
pubmed: 15126989
Mol Genet Metab Rep. 2017 Sep 14;13:69-75
pubmed: 28983456
BMC Pulm Med. 2017 Dec 28;17(1):215
pubmed: 29282101
Am J Med Genet A. 2008 May 15;146A(10):1286-95
pubmed: 18412124
Biol Blood Marrow Transplant. 2019 Jul;25(7):e226-e246
pubmed: 30772512
Mol Genet Metab. 2014 Feb;111(2):63-72
pubmed: 24388732
Arch Dis Child. 1995 Mar;72(3):263-7
pubmed: 7741581
Mol Genet Metab. 2013 May;109(1):70-6
pubmed: 23523338
Pediatrics. 2009 Jan;123(1):229-40
pubmed: 19117887
Acta Paediatr Suppl. 2002;91(439):71-8
pubmed: 12572847
Curr Pharm Biotechnol. 2011 Jun;12(6):931-45
pubmed: 21506915
Mol Genet Metab Rep. 2016 Oct 10;9:42-45
pubmed: 27761411
Can J Anaesth. 2002 Feb;49(2):198-202
pubmed: 11823401
Biochem Biophys Res Commun. 1991 Dec 16;181(2):677-83
pubmed: 1755850
Adv Exp Med Biol. 1976;68:261-76
pubmed: 820169
Mol Ther. 2010 Jun;18(6):1094-102
pubmed: 20332769
Pediatr Res. 2015 Dec;78(6):717-22
pubmed: 26331768
Ital J Pediatr. 2013 Sep 09;39:53
pubmed: 24011228
Mol Genet Metab Rep. 2019 Jul 12;20:100487
pubmed: 31341787
Mol Genet Metab Rep. 2015 Sep 30;5:19-25
pubmed: 28649537
Curr Gene Ther. 2011 Apr;11(2):132-43
pubmed: 21291356
Orphanet J Rare Dis. 2019 Jun 13;14(1):137
pubmed: 31196221
Neuroradiology. 1997 May;39(5):381-5
pubmed: 9189888
Mol Genet Metab. 2015 Feb;114(2):178-85
pubmed: 25284089
Mol Genet Metab. 2011 Dec;104(4):597-602
pubmed: 21930407
J Inherit Metab Dis. 2007 Nov;30(6):984
pubmed: 17879143
Mol Genet Metab Rep. 2015 Apr 22;3:65-74
pubmed: 26937399
Pediatrics. 2000 Jan;105(1):e10
pubmed: 10617747
Rheumatology (Oxford). 2011 Dec;50 Suppl 5:v49-59
pubmed: 22210671
J Inherit Metab Dis. 2014 Nov;37(6):979-90
pubmed: 24810369
Clin Genet. 2010 May;77(5):492-8
pubmed: 19968667
Hum Mol Genet. 2008 Mar 15;17(6):815-24
pubmed: 18056156
J Hum Genet. 2019 Nov;64(11):1153-1171
pubmed: 31455839
Orphanet J Rare Dis. 2017 May 23;12(1):98
pubmed: 28535791
JAMA. 1999 Jan 20;281(3):249-54
pubmed: 9918480
Genet Mol Res. 2016 Feb 22;15(1):
pubmed: 26910003
Mol Genet Metab. 2008 Aug;94(4):469-75
pubmed: 18502162
Res Rep Endocr Disord. 2012 Dec;2012(2):65-77
pubmed: 24839594
Mol Genet Metab. 2013 May;109(1):62-9
pubmed: 23535281
Ther Clin Risk Manag. 2013;9:45-53
pubmed: 23413237
J Inherit Metab Dis. 2007 Apr;30(2):165-74
pubmed: 17347914

Auteurs

Sharon Barak (S)

Department of Pediatric Rehabilitation, Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Ramat-Gan 5265601, Israel.
Kaye Academic College of Education, M.Ed. programs, Beer-Sheva 8414201, Israel.

Yair Anikster (Y)

The Sackler School of Medicine, Tel Aviv University, Tel Aviv 6997801, Israel.
Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Ramat Gan 5265601, Israel.
Wohl Institute for Translational Medicine, Chaim Sheba Medical Center, Ramat Gan 5265601, Israel.

Ifat Sarouk (I)

The National AT Center, Chaim Sheba Medical Center, Ramat Gan 5265601, Israel.
The Pediatric Pulmonology Unit, Chaim Sheba Medical Center, Edmond and Lilly Safra Children Hospital, Tel HaShomer, Ramat Gan 5265601, Israel.

Eve Stern (E)

Pediatric Endocrine and Diabetes Unit, Chaim Sheba Medical Center, Edmond and Lily Safra Children's Hospital, Ramat-Gan 5265601, Israel.

Etzyona Eisenstein (E)

Department of Pediatric Rehabilitation, Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Ramat-Gan 5265601, Israel.

Tamar Yissar (T)

Department of Pediatric Rehabilitation, Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Ramat-Gan 5265601, Israel.

Nir Sherr-Lurie (N)

Pediatric Orthopedic Unit, Edmond and Lilly Safra Children Hospital, Chaim Sheba Medical Center, Ramat Gan 5265601, Israel.

Annick Raas-Rothschild (A)

Institute of Rare Diseases, Edmond and Lily Safra Children's hospital, Chaim Sheba Medical Center, Ramat Gan 5265601, Israel.
The Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv 6997801, Israel.

Dafna Guttman (D)

Department of Pediatric Rehabilitation, Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Ramat-Gan 5265601, Israel.

Classifications MeSH