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Dienstag, 06. Januar 2009
The TSC International Conference 2008 took place on September 11-13,
2008 at the University of Sussex in Brighton, UK. Organized and
supported by the Tuberous Sclerosis Association in the UK, the
conference was attended by 108 participants from 18 countries,
including Australia, Austria, Belgium, Canada, Czech Republic, England,
France, Germany, Italy, Japan, The Netherlands, Northern Ireland,
Norway, Poland, Russia, Scotland, Sweden, and the United States. A
special part of the conference was the presentations by individuals
with TSC or parents of children with TSC who shared their touching
personal experiences living with TSC at the beginning of each session.
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The first session focused on Clinical Problems, Epidemiology and Natural History with
speakers focusing on progress in treating renal tumors in TSC, as well
as the natural history of TSC over the lifetime of individuals with the
disease. John Yates, MD (Natural History of TSC) and Finbar
O’Callaghan, MD (Epidemiology of TSC) provided the keynote lectures in
this session. Vicky Whittemore, PhD gave a presentation on the TSC
Natural History Database that is enrolling study participants at 13 TSC
Clinics in the USA and the data on 474 individuals.
The session on Clinical Trials included a keynote
presentation by Dr. John Bissler on the treatment of TSC with mTOR
inhibitors, and presentations by Darcy Krueger, MD on the RAD001
(Everolimus) single site trial in Cincinnati, OH for the treatment of
subependymal giant cell astrocytomas (SEGAs); Sandra Dabora, MD, PhD
discussed the status of the rapamycin (Sirolimus) multi-center clinical
trial for angiomyolipomas (AMLs); and Mark Davies, MD discussed the
TESSTAL trial that is testing the safety and efficacy of rapamycin
(Sirolimus) therapy for renal angiomyolipomas in individuals with TSC
or sporadic LAM in the UK. These studies pointed out that the mTOR
inhibitors are very effective in treating SEGAs, but appear to have a
variable effect on renal tumors, shrinking some but not all AMLs. The
discussion focused on the results of these studies and the observation
of tumor regrowth when the rapamycin or RAD001 are stopped.
On the second day, Petrus de Vries, MD, PhD provided the keynote
talk that focused on understanding the neurocognitive deficits in
individuals with TSC through understanding the molecular mechanism of
the disease (in other words, moving away from putting all the blame on
tubers!). Susanna Goorden discussed the role of the TSC genes in
learning, social behavior and synaptic plasticity; Ayla Humphrey, PhD
presented her results studying pre and post-seizure onset and cognitive
development in infants with TSC; and Deborah McCartney discussed
abnormalities in the white matter tracts and corpus callosum in adults
with TSC with normal IQ. Dena Hook, from the TS Alliance, ended the
session with her presentation on communication between doctors, schools
and parents of children with TSC.
The afternoon session
highlighted two keynote presentations by Elizabeth Henske, MD (Estrogen
and Lymphangioleiomyomatosis) and Brendan Manning, PhD (TSC1-2 Complex
and the mTOR Complexes). Additional speakers focused on the role of
the TSC1 and TSC2 genes in renal cystic disease (Cleo Bonnet and Cheryl
Walker, PhD) and in cell signaling (Stephen Land, PhD, Elena Lesma,
PhD, Elaine Dunlop, PhD, Margit Rosner, PhD, and Yugi Yamamoto, PhD).
The
last session focused on Neurobiology and Epilepsy in TSC with Bernd
Scheithauer, MD providing a keynote presentation on SEGAs and Finbar
O’Callaghan, MD discussing how malignant is epilepsy in TSC. Other
presentations focused on the effect of RAD001 on epilepsy and
neurocognition in individuals with TSC (Darcy Krueger, MD), and the
natural course of epilepsy and mental retardation in children with pre-
or perinatal diagnosis of TSC (Sergiusz Jozwiak, MD, PhD).
The
research conference was followed by an afternoon meeting of individuals
representing the Tuberous Sclerosis organizations who form the
consortium Tuberous Sclerosis International, with representatives of
The LAM Treatment Alliance from around the world to discuss ways in
which these two communities can partner and work together. All of the
individuals attending this meeting send a special thank you to Novartis
for sponsoring the dinner that followed the meeting.
The next
International TSC Research Conference, presented by the TS Alliance,
will take place at Indian Lakes Hilton Resort in Bloomingdale, IL on
September 13-15, 2009.
Text by TSalliance.org, Vicky H. Whittemore PhD
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Copyright by Tuberöse Sklerose Deutschland e.V.
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23.04.2009
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