Tuberous Sclerosis Complex (TSC): Expert Recommendations for Provision of Coordinated Care

被引：14

作者：

Annear, Nicholas M. P. ^{[1
,2
]}

Appleton, Richard E. ^{[3
]}

Bassi, Zahabiyah ^{[3
]}

Bhatt, Rupesh ^{[4
]}

Bolton, Patrick F. ^{[5
]}

Crawford, Pamela ^{[6
]}

Crowe, Alex ^{[7
]}

Tossi, Maureen ^{[2
,8
]}

Elmslie, Frances ^{[1
,2
]}

Finlay, Eric ^{[9
]}

Gale, Daniel P. ^{[10
]}

Henderson, Alex ^{[11
]}

Jones, Elizabeth A. ^{[12
,13
]}

Johnson, Simon R. ^{[14
,15
]}

Joss, Shelagh ^{[16
]}

Kerecuk, Larissa ^{[17
]}

Lipkin, Graham ^{[4
]}

Morrison, Patrick J. ^{[18
]}

O'Callaghan, Finbar J. ^{[19
]}

Cadwgan, Jill ^{[20
,21
,22
]}

Ong, Albert C. M. ^{[23
,24
]}

Sampson, Julian R. ^{[25
]}

Shepherd, Charles ^{[26
]}

Kingswood, J. Chris ^{[1
,2
,27
]}

机构：

[1] St Georges Univ Hosp NHS Fdn Trust, London, England

[2] St Georges Univ London, Mol & Clin Sci Res Inst, Genet & Genom Clin Acad Grp, London, England

[3] Alder Hey Childrens NHS Fdn Trust, Liverpool, Merseyside, England

[4] Univ Hosp Birmingham NHS Fdn Trust, Birmingham, W Midlands, England

[5] Kings Coll Hosp NHS Fdn Trust, London, England

[6] York Teaching Hosp NHS Fdn Trust, York, N Yorkshire, England

[7] Wirral Univ Teaching Hosp NHS Fdn Trust, Wirral, Merseyside, England

[8] Tuberous Sclerosis Assoc, London, England

[9] Leeds Teaching Hosp NHS Trust, Leeds, W Yorkshire, England

[10] UCL, Dept Renal Med, London, England

[11] Newcastle Upon Tyne Hosp NHS Fdn Trust, Newcastle Upon Tyne, Tyne & Wear, England

[12] Cent Manchester Univ Hosp NHS Fdn Trust, St Marys Hosp, Ctr Genom Med, Manchester, Lancs, England

[13] Univ Manchester, Manchester Acad Hlth Sci Ctr, Ctr Genom Med, Manchester, Lancs, England

[14] Univ Nottingham, Div Resp Med, Fac Med & Hlth Sci, Nottingham, England

[15] Natl Ctr Lymphangioleiomyomatosis, Nottingham, England

[16] NHS Greater Glasgow & Clyde, Glasgow, Lanark, Scotland

[17] Birmingham Childrens Hosp NHS Fdn Trust, Birmingham, W Midlands, England

[18] Belfast Hlth & Social Care Trust, Tuberous Sclerosis Clin, Belfast, Antrim, North Ireland

[19] Great Ormond St Hosp Children NHS Fdn Trust, London, England

[20] St Thomas Hosp, Evelina London Childrens Hosp, London, England

[21] Kings Coll London, Sch Life Course Sci, London, England

[22] Newcastle Univ, Inst Neurosci, Newcastle Upon Tyne, Tyne & Wear, England

[23] Univ Sheffield, Sch Med, Acad Nephrol Unit, Kidney Genet Grp, Sheffield, S Yorkshire, England

[24] Sheffield Teaching Hosp NHS Fdn Trust, Sheffield Kidney Inst, Sheffield, S Yorkshire, England

[25] Cardiff Univ, Sch Med, Inst Med Genet, Cardiff, S Glam, Wales

[26] Nobles Isle Man Hosp, Douglas, Scotland

[27] Brighton & Sussex Univ Hosp NHS Trust, Brighton, E Sussex, England

来源：

FRONTIERS IN NEUROLOGY | 2019年 / 10卷

关键词：

tuberous sclerosis complex; service specification; commissioning; surveillance; guidelines; clinics; rare disease; United Kingdom; NEUROPSYCHIATRIC ASPECTS; RETROSPECTIVE COHORT; DOUBLE-BLIND; SEIZURES; MANAGEMENT; EVEROLIMUS; EPILEPSY; SURVEILLANCE; MULTICENTER; PREVALENCE;

D O I：

10.3389/fneur.2019.01116

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

引用

页数：9

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