167 related articles for article (PubMed ID: 38469094)
1. Impact on physical, social, and family functioning of patients with metachromatic leukodystrophy and their family members in Japan: A qualitative study.
Koto Y; Yamashita W; Sakai N
Mol Genet Metab Rep; 2024 Mar; 38():101059. PubMed ID: 38469094
[TBL] [Abstract][Full Text] [Related]
2. Experiences of patients with metachromatic leukodystrophy, adrenoleukodystrophy, or Krabbe disease and their family members: a qualitative systematic review.
Koto Y; Ueki S; Yamakawa M; Sakai N
JBI Evid Synth; 2024 Mar; ():. PubMed ID: 38533650
[TBL] [Abstract][Full Text] [Related]
3. Experiences of patients and their family members with metachromatic leukodystrophy, adrenoleukodystrophy, and Krabbe disease: a qualitative systematic review protocol.
Koto Y; Ueki S; Yamakawa M; Sakai N
JBI Evid Synth; 2023 May; 21(5):1027-1033. PubMed ID: 36458855
[TBL] [Abstract][Full Text] [Related]
4. Metachromatic Leukodystrophy: An Assessment of Disease Burden.
Eichler FS; Cox TM; Crombez E; Dali CÍ; Kohlschütter A
J Child Neurol; 2016 Nov; 31(13):1457-1463. PubMed ID: 27389394
[TBL] [Abstract][Full Text] [Related]
5. Evaluating meaningful changes in physical functioning and cognitive declines in metachromatic leukodystrophy: a caregiver interview study.
Martin S; Harris N; Romanus D
J Patient Rep Outcomes; 2023 Jul; 7(1):70. PubMed ID: 37458805
[TBL] [Abstract][Full Text] [Related]
6. Insights into the natural history of metachromatic leukodystrophy from interviews with caregivers.
Harrington M; Whalley D; Twiss J; Rushton R; Martin S; Huynh L; Yang H
Orphanet J Rare Dis; 2019 Apr; 14(1):89. PubMed ID: 31036045
[TBL] [Abstract][Full Text] [Related]
7. An international study of caregiver-reported burden and quality of life in metachromatic leukodystrophy.
Sevin C; Barth M; Wilds A; Afriyie A; Walz M; Dillon A; Howie K; Pang F
Orphanet J Rare Dis; 2022 Sep; 17(1):329. PubMed ID: 36056437
[TBL] [Abstract][Full Text] [Related]
8. The burden of disease in metachromatic leukodystrophy: results of a caregiver survey in the UK and Republic of Ireland.
Thomas S; Morrison A; Morton G; Roberts P; Clark V; Imrie J
Orphanet J Rare Dis; 2024 Feb; 19(1):87. PubMed ID: 38403596
[TBL] [Abstract][Full Text] [Related]
9. Development of the Impact of Juvenile Metachromatic Leukodystrophy on Physical Activities scale.
Brown TM; Martin S; Fehnel SE; Deal LS
J Patient Rep Outcomes; 2017; 2(1):15. PubMed ID: 29757307
[TBL] [Abstract][Full Text] [Related]
10. The importance of early diagnosis and views on newborn screening in metachromatic leukodystrophy: results of a Caregiver Survey in the UK and Republic of Ireland.
Morton G; Thomas S; Roberts P; Clark V; Imrie J; Morrison A
Orphanet J Rare Dis; 2022 Nov; 17(1):403. PubMed ID: 36329444
[TBL] [Abstract][Full Text] [Related]
11. Understanding caregiver descriptions of initial signs and symptoms to improve diagnosis of metachromatic leukodystrophy.
Eichler F; Sevin C; Barth M; Pang F; Howie K; Walz M; Wilds A; Calcagni C; Chanson C; Campbell L
Orphanet J Rare Dis; 2022 Oct; 17(1):370. PubMed ID: 36195888
[TBL] [Abstract][Full Text] [Related]
12. Electroneurography and Advanced Neuroimaging Profile in Pediatric-onset Metachromatic Leukodystrophy.
Raina A; Nair SS; Nagesh C; Thomas B; Nair M; Sundaram S
J Pediatr Neurosci; 2019; 14(2):70-75. PubMed ID: 31516623
[TBL] [Abstract][Full Text] [Related]
13. Experiences of patients with lysosomal storage disorders who are receiving enzyme-replacement therapy and the experiences of their family members: a qualitative systematic review.
Koto Y; Ueki S; Yamakawa M; Sakai N
JBI Evid Synth; 2022 Jun; 20(6):1474-1510. PubMed ID: 34839313
[TBL] [Abstract][Full Text] [Related]
14. Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.
Busolo D; Woodgate R
JBI Database System Rev Implement Rep; 2015 Jan; 13(1):99-111. PubMed ID: 26447011
[TBL] [Abstract][Full Text] [Related]
15. The impact of severe rare chronic neurological disease in childhood on the quality of life of families-a study on MLD and PCH2.
Ammann-Schnell L; Groeschel S; Kehrer C; Frölich S; Krägeloh-Mann I
Orphanet J Rare Dis; 2021 May; 16(1):211. PubMed ID: 33971942
[TBL] [Abstract][Full Text] [Related]
16. General anesthesia safety in progressive leukodystrophies: A retrospective study of patients with Krabbe disease and metachromatic leukodystrophy.
Bascou NA; Marcos MC; Beltran Quintero ML; Roosen-Marcos MC; Cladis FP; Poe MD; Escolar ML
Paediatr Anaesth; 2019 Oct; 29(10):1053-1059. PubMed ID: 31359511
[TBL] [Abstract][Full Text] [Related]
17. Lentiviral haemopoietic stem-cell gene therapy in early-onset metachromatic leukodystrophy: an ad-hoc analysis of a non-randomised, open-label, phase 1/2 trial.
Sessa M; Lorioli L; Fumagalli F; Acquati S; Redaelli D; Baldoli C; Canale S; Lopez ID; Morena F; Calabria A; Fiori R; Silvani P; Rancoita PM; Gabaldo M; Benedicenti F; Antonioli G; Assanelli A; Cicalese MP; Del Carro U; Sora MG; Martino S; Quattrini A; Montini E; Di Serio C; Ciceri F; Roncarolo MG; Aiuti A; Naldini L; Biffi A
Lancet; 2016 Jul; 388(10043):476-87. PubMed ID: 27289174
[TBL] [Abstract][Full Text] [Related]
18. Modified Delphi procedure-based expert consensus on endpoints for an international disease registry for Metachromatic Leukodystrophy: The European Metachromatic Leukodystrophy initiative (MLDi).
Schoenmakers DH; Beerepoot S; van den Berg S; Adang L; Bley A; Boelens JJ; Fumagalli F; Goettsch WG; Grønborg S; Groeschel S; van Hasselt PM; Hollak CEM; Lindemans C; Mochel F; Mol PGM; Sevin C; Zerem A; Schöls L; Wolf NI
Orphanet J Rare Dis; 2022 Feb; 17(1):48. PubMed ID: 35164810
[TBL] [Abstract][Full Text] [Related]
19. Neurofilament light chain and glial fibrillary acidic protein levels in metachromatic leukodystrophy.
Beerepoot S; Heijst H; Roos B; Wamelink MMC; Boelens JJ; Lindemans CA; van Hasselt PM; Jacobs EH; van der Knaap MS; Teunissen CE; Wolf NI
Brain; 2022 Mar; 145(1):105-118. PubMed ID: 34398223
[TBL] [Abstract][Full Text] [Related]
20.
; ; . PubMed ID:
[No Abstract] [Full Text] [Related]
[Next] [New Search]