Evaluation of age of death in Niemann-Pick disease, type C: Utility of disease support group websites to understand natural history.

Bianconi, Simona E; Hammond, Dylan I; Farhat, Nicole Y; Dang Do, An; Jenkins, Kisha; Cougnoux, Antony; Martin, Kyle; Porter, Forbes D

Bianconi, Simona E; Hammond, Dylan I; Farhat, Nicole Y; Dang Do, An; Jenkins, Kisha; Cougnoux, Antony; Martin, Kyle; Porter, Forbes D.

Afiliação

Bianconi SE; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Hammond DI; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Farhat NY; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Dang Do A; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Jenkins K; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Cougnoux A; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Martin K; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA.
Porter FD; Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, DHHS, Bethesda, MD, USA. Electronic address: fdporter@mail.nih.gov.

Mol Genet Metab ; 126(4): 466-469, 2019 04.

Article em En | MEDLINE | ID: mdl-30850267

Assuntos

Internet; Doença de Niemann-Pick Tipo C/mortalidade; Grupos de Autoajuda; Adolescente; Adulto; Fatores Etários; Idoso; Criança; Pré-Escolar; Feminino; Humanos; Lactente; Expectativa de Vida; Masculino; Pessoa de Meia-Idade; Adulto Jovem

Palavras-chave

Lysosomal storage disease; NPC; Niemann-Pick disease, type C

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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Grupos de Autoajuda / Internet / Doença de Niemann-Pick Tipo C Idioma: En Ano de publicação: 2019 Tipo de documento: Article

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