The goal of this international conference is to stimulate collaborative research to address unmet medical needs of those affected by tuberous sclerosis complex (TSC) and related disorders, including autism, epilepsy, lymphangioleiomyomatosis (LAM), cancer, and rare diseases with overlapping phenotypes. Because of the wide variety of symptoms associated with TSC, research into TSC will increase knowledge relevant to similar symptoms that occur in individuals without TSC. Likewise, advances in the broader fields of autism, epilepsy, and cancer can improve the understanding and, therefore, the treatment of TSC. This conference is important and timely in part because it is scheduled six months after a small, invitation-only workshop sponsored by NINDS to update the NIH-sponsored Research Plan for Tuberous Sclerosis created in 2003. The outcomes of the NINDS-sponsored workshop will be distributed at this research conference and will create a framework for discussion of the future direction of new research findings presented at the conference. Based on previous, similar conferences, the 2015 research conference will attract >200 attendees, including 25 invited speakers and 40 posters. The conference will bring together individuals who may otherwise not have an opportunity to meet. In addition to inviting five speakers with no TSC-related publications, the organizing committee will select 15 trainees or junior investigators from submitted abstracts to receive travel awards to offset costs of attendance. By hosting the conference in London, UK, in partnership with the Tuberous Sclerosis Association of the UK, we encourage participation of researchers from outside the US in a location accessible by direct flights from major US cities. This conference maintains the structural and logistical features of previously successful conferences hosted by the TS Alliance while changing the topics and invited participants in important ways. The 2015 conference will cover both basic and clinical research, but the topics and speakers are chosen to focus on clinical studies and new science that offers potential for new biomarkers and therapies to address the greatest unmet burdens on those with TSC. To ensure that concepts presented differ greatly from previous conferences, 56% of invited speakers for 2015 were not speakers at the 2013 conference, and 28% did not attend the 2013 conference at all. To ensure new knowledge and ideas are presented, 20% of invited speakers have no publication on tuberous sclerosis in PubMed. Also, 24% are junior investigators funded by the TS Alliance or TSA who will have an opportunity for exposure and critical scientific feedback on their funded research, and 32% of invited speakers are from outside the US. There are no simultaneous platform sessions, so all attendees can hear and discuss all oral presentations. Breaks of 30 minutes are designed to encourage networking. Success of the 2015 conference will be measured by the acceleration of research through collaborative projects discussed during the conference. The latter can be measured by follow- up questionnaires to attendees and tracking of collaborative initiatives funded by NIH and other organizations.

Public Health Relevance

This conference will bring together basic and clinical researchers interested in tuberous sclerosis complex (TSC) and related disorders, including autism, epilepsy, lymphangioleiomyomatosis (LAM), cancer, and rare diseases with related features. This is important because research into TSC increases knowledge relevant to similar symptoms that occur in individuals without TSC, and because advances in the broader fields of autism, epilepsy, and cancer can improve the understanding and, therefore, the treatment of TSC. Through communication and collaboration of participating senior and junior researchers and trainees, the conference will stimulate and accelerate basic and clinical research to improve health care and quality of life for individuals with TSC and multiple related disorders.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Conference (R13)
Project #
1R13NS093913-01
Application #
8986720
Study Section
National Institute of Neurological Disorders and Stroke Initial Review Group (NSD)
Program Officer
Mamounas, Laura
Project Start
2015-08-01
Project End
2016-07-31
Budget Start
2015-08-01
Budget End
2016-07-31
Support Year
1
Fiscal Year
2015
Total Cost
Indirect Cost
Name
Tuberous Sclerosis Alliance
Department
Type
DUNS #
103180691
City
Silver Spring
State
MD
Country
United States
Zip Code
20910