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TSC Clinics Education Meeting 2021

May 7 2021 @ 11:00 AM - 2:20 PM


Tuberous Sclerosis Complex (TSC) is a rare genetic condition that affects around 1 million people worldwide.


The TSC Clinics Education Meeting is an opportunity to speak and learn from TSC Clinic professionals from across the UK. The meeting aims to encourage a consistent quality of care in TSC  and push forward our understanding of best practice in the diagnosis, management and treatment of TSC.


Agenda and speakers:

Time Topic Speaker
11:00 – 11:05 Welcome and introductions Dr Frances Elmslie (St George’s University Hospitals)
11:05 – 11:15 How can the TSA help support TSC clinics? Tuberous Sclerosis Association
11:15 – 11:45 Prenatal diagnosis and early management Dr Frances Elmslie (St George’s University Hospitals)
11:45 – 12:15 Neurodevelopment: An update Dr Jill Cadwgan (Evelina London Children’s Hospital)
12:15 – 12:45 Epilepsy: An update Prof Finbar O’Callaghan (Great Ormond Street Hospital), Dr Sam Amin (University Hospitals Bristol)
12:45 – 13:15 Lunch break and networking  
13:15 – 13:45 The role of the nurse in TSC clinics Catherine Swales (Evelina London Children’s Hospital) and Lydia Israel (St George’s University Hospitals)
13:45 – 14:15 Challenging behaviours in TSC To be confirmed
14:15 – 14:20 Thank you and close Dr Frances Elmslie (St George’s University Hospitals)


The meeting is CPD certified and colleagues across all specialties are invited. To register your free place, please visit the event page.


United Kingdom


Tuberous Sclerosis Association
0300 222 5737
View Organiser Website
With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.