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

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

Nicholas M P Annear  1   2 , Richard E Appleton  3 , Zahabiyah Bassi  3 , Rupesh Bhatt  4 , Patrick F Bolton  5 , Pamela Crawford  6 , Alex Crowe  7 , Maureen Tossi  2   8 , Frances Elmslie  1   2 , Eric Finlay  9 , Daniel P Gale  10 , Alex Henderson  11 , Elizabeth A Jones  12   13 , Simon R Johnson  14   15 , Shelagh Joss  16 , Larissa Kerecuk  17 , Graham Lipkin  4 , Patrick J Morrison  18 , Finbar J O'Callaghan  19 , Jill Cadwgan  20   21   22 , Albert C M Ong  23   24 , Julian R Sampson  25 , Charles Shepherd  26 , J Chris Kingswood  1   2   27
Affiliations

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

Nicholas M P Annear et al. Front Neurol. .
No abstract available

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

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Figures

Figure 1
Figure 1
Network Diagram showing primary organ systems affected for each patient from a retrospective cohort analysis of UK TSC patient data (n = 324); sourced from the Clinical Practice Research Datalink (CPRD), linked to secondary care data from Hospital Episode Statistics (HES) database, and the Office for National Statistics (ONS) mortality register (Reproduced with permission from Eur J Paediatr Neurol) (7).
Figure 2
Figure 2
Disease Manifestations of TSC Reported at Baseline in TOSCA* Participants (n = 2,093) (Reproduced with permission of TOSCA consortium, presented at The International TSC research Conference Tokyo 2018).
See this image and copyright information in PMC

References

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