Advances and future directions for tuberous sclerosis complex research

Recommendations from the 2015 strategic planning conference

Mustafa Sahin, Elizabeth P. Henske, Brendan D. Manning, Kevin C. Ess, John Bissler, Eric Klann, David J. Kwiatkowski, Steven L. Roberds, Alcino J. Silva, Coryse St Hillaire-Clarke, Lisa R. Young, Mark Zervas, Laura A. Mamounas

Research output: Contribution to journalReview article

17 Citations (Scopus)

Abstract

On March 10 to March 12, 2015, the National Institute of Neurological Disorders and Stroke and the Tuberous Sclerosis Alliance sponsored a workshop in Bethesda, Maryland, to assess progress and new opportunities for research in tuberous sclerosis complex with the goal of updating the 2003 Research Plan for Tuberous Sclerosis (http://www.ninds.nih.gov/about-ninds/plans/tscler-research-plan.htm). In addition to the National Institute of Neurological Disorders and Stroke and Tuberous Sclerosis Alliance, participants in the strategic planning effort and workshop included representatives from six other Institutes of the National Institutes of Health, the Department of Defense Tuberous Sclerosis Complex Research Program, and a broad cross-section of basic scientists and clinicians with expertise in tuberous sclerosis complex along with representatives from the pharmaceutical industry. Here we summarize the outcomes from the extensive premeeting deliberations and final workshop recommendations, including (1) progress in the field since publication of the initial 2003 research plan for tuberous sclerosis complex, (2) the key gaps, needs, and challenges that hinder progress in tuberous sclerosis complex research, and (3) a new set of research priorities along with specific recommendations for addressing the major challenges in each priority area. The new research plan is organized around both short-term and long-term goals with the expectation that progress toward specific objectives can be achieved within a five to ten year time frame.

Original languageEnglish (US)
Pages (from-to)1-12
Number of pages12
JournalPediatric Neurology
Volume60
DOIs
StatePublished - Jul 1 2016

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Tuberous Sclerosis
Research
National Institute of Neurological Disorders and Stroke
Education
Direction compound
Strategic Planning
National Institutes of Health (U.S.)
Drug Industry
Publications

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health
  • Neurology
  • Developmental Neuroscience
  • Clinical Neurology

Cite this

Advances and future directions for tuberous sclerosis complex research : Recommendations from the 2015 strategic planning conference. / Sahin, Mustafa; Henske, Elizabeth P.; Manning, Brendan D.; Ess, Kevin C.; Bissler, John; Klann, Eric; Kwiatkowski, David J.; Roberds, Steven L.; Silva, Alcino J.; Hillaire-Clarke, Coryse St; Young, Lisa R.; Zervas, Mark; Mamounas, Laura A.

In: Pediatric Neurology, Vol. 60, 01.07.2016, p. 1-12.

Research output: Contribution to journalReview article

Sahin, M, Henske, EP, Manning, BD, Ess, KC, Bissler, J, Klann, E, Kwiatkowski, DJ, Roberds, SL, Silva, AJ, Hillaire-Clarke, CS, Young, LR, Zervas, M & Mamounas, LA 2016, 'Advances and future directions for tuberous sclerosis complex research: Recommendations from the 2015 strategic planning conference', Pediatric Neurology, vol. 60, pp. 1-12. https://doi.org/10.1016/j.pediatrneurol.2016.03.015
Sahin, Mustafa ; Henske, Elizabeth P. ; Manning, Brendan D. ; Ess, Kevin C. ; Bissler, John ; Klann, Eric ; Kwiatkowski, David J. ; Roberds, Steven L. ; Silva, Alcino J. ; Hillaire-Clarke, Coryse St ; Young, Lisa R. ; Zervas, Mark ; Mamounas, Laura A. / Advances and future directions for tuberous sclerosis complex research : Recommendations from the 2015 strategic planning conference. In: Pediatric Neurology. 2016 ; Vol. 60. pp. 1-12.
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