Researchers

Natural History Database

Implemented in 2006, the TSC Natural History Database captures clinical data to document the impact of the disease on a person’s health over his or her lifetime. More than 2,000 people with TSC are enrolled in the project among 18 U.S.-based clinical sites. The TS Alliance provides funding to participating clinics to perform data entry, monitors the integrity of the database, and makes data available to investigators to answer specific research questions and identify potential participants for clinical trials and studies.

Participating TSC Clinics

clinic-mapb

Map Key:

  1. Minnesota Epilepsy Group, P.A., St. Paul, MN (Michael Frost, MD)
  2. Texas Scottish Rite Hospital for Children, Dallas, TX (Steven Sparagana, MD)
  3. New York University Medical Center, New York, NY (Orrin Devinsky, MD to 2015, Josiane LaJoie, MD)
  4. Massachusetts General Hospital, Boston, MA (Elizabeth Thiele, MD, PhD)
  5. Children’s National Medical Center, Fairfax, VA (William McClintock, MD)
  6. University of Chicago, Chicago, IL (Michael Kohrman, MD to 2016, Patricia Ogden, APN, FNP, NP-C)
  7. Oakland Children’s Hospital, Oakland, CA  (Candida Brown, MD to 2010, Rachel Kuperman, MD)
  8. UCLA Medical Center, Los Angeles, CA  (Joyce T. Wu, MD)
  9. University of Texas, Houston (Hope Northrup, MD)
  10. University of Alabama, Birmingham (E. Martina Bebin, MD, MPA & Bruce Korf, MD, PhD)
  11. The Cleveland Clinic Foundation, Cleveland, OH (Ajay Gupta, MD)
  12. University of Colorado, Denver (Paul Levisohn, MD to 2011 & Susan Koh, MD)
  13. Miami Children’s Hospital, Miami, FL (Ian O’Neil Miller, MD & Michael Duchowny, MD)
  14. Loma Linda University Medical Center, Loma Linda, CA (Stephen Ashwal, MD)
  15. Pennsylvania Medical Center, Philadelphia, PA (Peter Crino, MD, PhD to 2012 & Katherine Nathanson, MD)
  16. Boston Children’s Hospital, Boston, MA (Mustafa Sahin, MD, PhD)
  17. Cincinnati Children’s Hospital, Cincinnati, OH (Darcy Krueger, MD, PhD)
  18. Washington University St. Louis, MO (Michael Wong, MD, PhD)

Publications

Since 2010, researchers have published seven articles in well-regarded, peer-reviewed biomedical journals using data from the TSC Natural History Database. This published research has contributed to our understanding of TSC in a number of relevant fields, including neurology, psychiatry, and ophthalmology. Several papers have found correlations between gene mutations and specific TSC symptoms, as well as correlations between different kinds of symptoms. This type of work is helping us understand why and how different individuals with TSC experience the disease differently.

Please see the TS Alliance Mendeley group for more information on these papers, as well as other articles produced with the help of TS Alliance grants, data, and biosamples.

CNS and TAND

Ophthalmology

Urology

Questions?

Contact Jo Anne Nakagawa, TS Alliance Director of Clinical Projects, at (240) 638-4654 or jnakagawa@tsalliance.org.  Download the TSC Natural History Database Project brochure for participants.