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

Nicholas M P Annear; Richard E Appleton; Zahabiyah Bassi; Rupesh Bhatt; Patrick F Bolton; Pamela Crawford; Alex Crowe; Maureen Tossi; Frances Elmslie; Eric Finlay; Daniel P Gale; Alex Henderson; Elizabeth A Jones; Simon R Johnson; Shelagh Joss; Larissa Kerecuk; Graham Lipkin; Patrick J Morrison; Finbar J O'Callaghan; Jill Cadwgan; Albert C M Ong; Julian R Sampson; Charles Shepherd; J Chris Kingswood

doi:10.3389/fneur.2019.01116

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

Front Neurol. 2019 Nov 6:10:1116. doi: 10.3389/fneur.2019.01116. eCollection 2019.

Authors

Nicholas M P Annear^{1

2}, Richard E Appleton³, Zahabiyah Bassi³, Rupesh Bhatt⁴, Patrick F Bolton⁵, Pamela Crawford⁶, Alex Crowe⁷, Maureen Tossi^{2

8}, Frances Elmslie^{1

2}, Eric Finlay⁹, Daniel P Gale¹⁰, Alex Henderson¹¹, Elizabeth A Jones^{12

13}, Simon R Johnson^{14

15}, Shelagh Joss¹⁶, Larissa Kerecuk¹⁷, Graham Lipkin⁴, Patrick J Morrison¹⁸, Finbar J O'Callaghan¹⁹, Jill Cadwgan^{20

21

22}, Albert C M Ong^{23

24}, Julian R Sampson²⁵, Charles Shepherd²⁶, J Chris Kingswood^{1

2

27}

Affiliations

¹ St George's University Hospitals NHS Foundation Trust, London, United Kingdom.
² Genetics and Genomics Clinical Academic Group, Molecular and Clinical Sciences Research Institute, St George's, University of London, London, United Kingdom.
³ Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom.
⁴ University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom.
⁵ King's College Hospital NHS Foundation Trust, London, United Kingdom.
⁶ York Teaching Hospitals NHS Foundation Trust, York, United Kingdom.
⁷ Wirral University Teaching Hospitals NHS Foundation Trust, Merseyside, United Kingdom.
⁸ Tuberous Sclerosis Association, London, United Kingdom.
⁹ Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom.
¹⁰ Department of Renal Medicine, University College London, London, United Kingdom.
¹¹ Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, United Kingdom.
¹² Centre for Genomic Medicine, St. Mary's Hospital, Central Manchester University Hospitals NHS Foundation Trust, Manchester, United Kingdom.
¹³ Centre for Genomic Medicine, Manchester Academic Health Science Centre, University of Manchester, Manchester, United Kingdom.
¹⁴ Division of Respiratory Medicine, Faculty of Medicine & Health Sciences, University of Nottingham, Nottingham, United Kingdom.
¹⁵ National Centre for Lymphangioleiomyomatosis, Nottingham, United Kingdom.
¹⁶ NHS Greater Glasgow and Clyde, Glasgow, United Kingdom.
¹⁷ Birmingham Children's Hospital NHS Foundation Trust, Birmingham, United Kingdom.
¹⁸ Tuberous Sclerosis Clinic, Belfast Health and Social Care Trust, Belfast, United Kingdom.
¹⁹ Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.
²⁰ Evelina London Children's Hospital, St. Thomas' Hospital, London, United Kingdom.
²¹ School of Life Course Sciences, King's College London, London, United Kingdom.
²² Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, United Kingdom.
²³ Kidney Genetics Group, Academic Nephrology Unit, University of Sheffield Medical School, Sheffield, United Kingdom.
²⁴ Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, United Kingdom.
²⁵ Institute of Medical Genetics, Cardiff University School of Medicine, Cardiff, United Kingdom.
²⁶ Nobles Hospital, Douglas, United Kingdom.
²⁷ Brighton and Sussex University Hospitals NHS Trust, Brighton, United Kingdom.

No abstract available

Keywords: United Kingdom; clinics; commissioning; guidelines; rare disease; service specification; surveillance; tuberous sclerosis complex.