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

Frontiers in Neurology

卷:10

Simon R. Johnson¹  Daniel P. Gale²  Alex Henderson⁴  Jill Cadwgan⁵  Elizabeth A. Jones⁸  Albert C. M. Ong⁹  Julian R. Sampson¹¹  Charles Shepherd¹²  Shelagh Joss¹³  Larissa Kerecuk¹⁴  Graham Lipkin¹⁶  Finbar J. O'Callaghan¹⁷  Zahabiyah Bassi¹⁹  Richard E. Appleton¹⁹  Frances Elmslie²⁰  Nicholas M. P. Annear²⁰  J. Chris Kingswood²⁰  Patrick F. Bolton²¹  Eric Finlay²²  Maureen Tossi²⁴  Rupesh Bhatt²⁵  Patrick J. Morrison²⁵  Alex Crowe²⁶  Pamela Crawford²⁷ 

[1] Health Sciences, University of Nottingham, Nottingham, United Kingdom;

[2] 0Department of Renal Medicine, University College London, London, United Kingdom;

[3] 0Evelina London Children's Hospital, St. Thomas' Hospital, London, United Kingdom;

[4] 1Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, United Kingdom;

[5] 1School of Life Course Sciences, King's College London, London, United Kingdom;

[6] 2Centre for Genomic Medicine, St. Mary's Hospital, Central Manchester University Hospitals NHS Foundation Trust, Manchester, United Kingdom;

[7] 2Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, United Kingdom;

[8] 3Centre for Genomic Medicine, Manchester Academic Health Science Centre, University of Manchester, Manchester, United Kingdom;

[9] 3Kidney Genetics Group, Academic Nephrology Unit, University of Sheffield Medical School, Sheffield, United Kingdom;

[10] 4Division of Respiratory Medicine, Faculty of Medicine &

[11] 4Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, United Kingdom;

[12] 5Institute of Medical Genetics, Cardiff University School of Medicine, Cardiff, United Kingdom;

[13] 5National Centre for Lymphangioleiomyomatosis, Nottingham, United Kingdom;

[14] 6NHS Greater Glasgow and Clyde, Glasgow, United Kingdom;

[15] 6Nobles Hospital, Douglas, United Kingdom;

[16] 7Birmingham Children's Hospital NHS Foundation Trust, Birmingham, United Kingdom;

[17] 8Tuberous Sclerosis Clinic, Belfast Health and Social Care Trust, Belfast, United Kingdom;

[18] 9Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom;

[19] Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom;

[20] Genetics and Genomics Clinical Academic Group, Molecular and Clinical Sciences Research Institute, St George's, University of London, London, United Kingdom;

[21] King's College Hospital NHS Foundation Trust, London, United Kingdom;

[22] Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom;

[23] St George's University Hospitals NHS Foundation Trust, London, United Kingdom;

[24] Tuberous Sclerosis Association, London, United Kingdom;

[25] University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom;

[26] Wirral University Teaching Hospitals NHS Foundation Trust, Merseyside, United Kingdom;

[27] York Teaching Hospitals NHS Foundation Trust, York, United Kingdom;

关键词: tuberous sclerosis complex;    service specification;    commissioning;    surveillance;    guidelines;    clinics;   

DOI  :  10.3389/fneur.2019.01116

来源: DOAJ

【 授权许可】

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