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Clinical and Molecular Characteristics of Neuronal Ceroid Lipofuscinosis in Saudi Arabia.
Saleh, Mohammed M; Hamhom, Abdulrahim M; Al-Otaibi, Ali; AlGhamdi, Malak; Housawi, Yousef; Aljadhai, Yaser I; Alameer, Seham; Almannai, Mohammed; Jad, Lamyaa A; Alwadei, Ali H; Tabassum, Sadia; Alsaman, Abdulaziz; AlAsmari, Ali; Al Mutairi, Fuad; Althiyab, Hamad; Bashiri, Fahad A; AlHumaidi, Suzan; Alfadhel, Majid; Mink, Jonathan W; AlHashim, Aqeela; Faqeih, Eissa A.
Afiliación
  • Saleh MM; Section of Medical Genetics, Children's Specialist Hospital, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Hamhom AM; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Al-Otaibi A; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • AlGhamdi M; Unit of Medical Genetics, Department of Pediatrics, College of Medicine, King Saud University Medical City, King Saud University, Riyadh, Saudi Arabia.
  • Housawi Y; Section of Medical Genetics, Pediatric Department, King Fahad Specialist Hospital, Dammam, Saudi Arabia.
  • Aljadhai YI; Department of Neuroimaging and Intervention, Medical Imaging Administration, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Alameer S; Department of Pediatric, Ministry of the National Guard-Health Affairs, King Abdullah International Medical Research Center, King Saud bin Abdulaziz University for Health Sciences, Jeddah, Saudi Arabia.
  • Almannai M; Genetics and Precision Medicine Department (GPM), King Abdullah Specialized Children's Hospital (KASCH), King Abdulaziz Medical City, Ministry of National Guard Health Affairs (MNG-HA), Riyadh, Saudi Arabia.
  • Jad LA; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Alwadei AH; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Tabassum S; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Alsaman A; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • AlAsmari A; Section of Medical Genetics, Children's Specialist Hospital, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Al Mutairi F; Genetics and Precision Medicine Department (GPM), King Abdullah Specialized Children's Hospital (KASCH), King Abdulaziz Medical City, Ministry of National Guard Health Affairs (MNG-HA), Riyadh, Saudi Arabia; King Saud Bin Abdulaziz University for Health Sciences (KSAU-HS), Ministry of National Guard
  • Althiyab H; Genetics and Precision Medicine Department (GPM), King Abdullah Specialized Children's Hospital (KASCH), King Abdulaziz Medical City, Ministry of National Guard Health Affairs (MNG-HA), Riyadh, Saudi Arabia.
  • Bashiri FA; Division of Pediatric Neurology, Department of Pediatrics, College of Medicine, King Saud University Medical City, King Saud University, Riyadh, Saudi Arabia.
  • AlHumaidi S; Section of Medical Genetics, Children's Hospital, King Saud Medical City, Riyadh, Saudi Arabia.
  • Alfadhel M; Genetics and Precision Medicine Department (GPM), King Abdullah Specialized Children's Hospital (KASCH), King Abdulaziz Medical City, Ministry of National Guard Health Affairs (MNG-HA), Riyadh, Saudi Arabia; King Saud Bin Abdulaziz University for Health Sciences (KSAU-HS), Ministry of National Guard
  • Mink JW; Department of Neurology, University of Rochester, Rochester, New York.
  • AlHashim A; Department of Pediatric Neurology, National Neuroscience Institute, King Fahad Medical City, Riyadh, Saudi Arabia.
  • Faqeih EA; Section of Medical Genetics, Children's Specialist Hospital, King Fahad Medical City, Riyadh, Saudi Arabia. Electronic address: efaqeih@kfmc.med.sa.
Pediatr Neurol ; 155: 149-155, 2024 Jun.
Article en En | MEDLINE | ID: mdl-38653183
ABSTRACT

BACKGROUND:

Neuronal ceroid lipofuscinoses (NCLs) represent a heterogeneous group of inherited metabolic lysosomal disorders characterized by neurodegeneration. This study sought to describe the clinical and molecular characteristics of NCLs in Saudi Arabia and determine the most common types in that population.

METHODS:

A retrospective review of electronic medical records was conducted for 63 patients with NCL (55 families) from six tertiary and referral centers in Saudi Arabia between 2008 and 2022. Clinical, radiological, and neurophysiological data as well as genetic diagnoses were reviewed.

RESULTS:

CLN6 was the predominant type, accounting for 45% of cases in 25 families. The most common initial symptoms were speech delay (53%), cognitive decline (50%) and/or gait abnormalities (48%), and seizure (40%). Behavioral symptomatology was observed in 20%, whereas visual impairment was less frequently (9.3%) encountered. Diffuse cerebral and cerebellar atrophy was the predominant finding on brain magnetic resonance imaging. Electroencephalography generally revealed background slowing in all patients with generalized epileptiform discharges in 60%. The most common genotype detected was the p.Ser265del variant found in 36% (20 of 55 families). The most rapidly progressive subtypes were CLN2 and CLN6. Two patients with each died at age five years. The earliest age at which a patient was nonambulatory was two years in a patient with CLN14.

CONCLUSIONS:

This is the largest molecularly confirmed NCL cohort study from Saudi Arabia. Characterizing the natural history of specific NLC types can increase understanding of the underlying pathophysiology and distinctive genotype-phenotype characteristics, facilitating early diagnosis and treatment initiation as well as genetic counseling for families.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Tripeptidil Peptidasa 1 / Lipofuscinosis Ceroideas Neuronales Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male País/Región como asunto: Asia Idioma: En Revista: Pediatr Neurol Asunto de la revista: NEUROLOGIA / PEDIATRIA Año: 2024 Tipo del documento: Article País de afiliación: Arabia Saudita Pais de publicación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Tripeptidil Peptidasa 1 / Lipofuscinosis Ceroideas Neuronales Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male País/Región como asunto: Asia Idioma: En Revista: Pediatr Neurol Asunto de la revista: NEUROLOGIA / PEDIATRIA Año: 2024 Tipo del documento: Article País de afiliación: Arabia Saudita Pais de publicación: Estados Unidos