Abstract Details

Title Incidence of Primary Torsion Dystonia in a Multiethnic Population

Topic Movement Disorders

Presentation(s) S53 - (-)

Poster/Presentation
Number 001

Objective

Background PTD incidence has been estimated in only a few studies, representing fewer than 120 cases.

Design/Methods PTD cases were identified in the > 3 million members of Kaiser Permanente Northern California (KPNC) for the period 2003-2007. Individuals with any diagnostic code for dystonia were identified. A complete chronological list of all health care utilizations was reviewed for each individual. Final diagnostic classification was determined by consensus of two movement disorders specialists, including when possible a neurological examination with standardized videotape data collection. Average annual incidence was calculated for each dystonia subtype and for PTD overall, and for gender-, race/ethnicity- and age-specific groups. Direct standardization of rates for age and gender used the 2000 U.S. census population.

Results From 7,769 records identified for review, 741 qualified as incident PTD, with 78% being white. Incidence per 105 person-years was: all PTD 4.4 (95% CI 4.08,4.72), blepharospasm 1.7 (1.5,1.89), cervical dystonia 1.31 (1.13,1.5), laryngeal dystonia 0.81 (0.67, 0.94), limb 0.74 (0.6, 0.85), oromandibular 0.37 (0.28, 0.46), generalized 0.04 (0.01, 0.07). Blepharospasm, cervical dystonia and laryngeal dystonia were more common in women than in men.

Conclusions PTD incidence is estimated based on more than eleven times as many cases as the next largest study. Incidence estimates were higher for most dystonia subtypes, compared to prior estimates. Since PTD may be missed even in this equal access health care system, our estimates are likely to be conservative.

Authors/Disclosures
Caroline M. Tanner, MD, PhD, FAAN (University of California San Francisco, Weill Institute for Neurosciences) PRESENTER	Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Evidera. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals/Cavion. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bial . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Supernus. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Genentech. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Faculty, CME presentation with Medscape /WebND.
Kailash P. Bhatia, MD, FAAN (UCL)	Dr. Bhatia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Ipsen. Dr. Bhatia has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MDS . Dr. Bhatia has received publishing royalties from a publication relating to health care.
	No disclosure on file
Samuel Goldman, MD, MPH	Dr. Goldman has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Littlepage Booth Leckman. The institution of Dr. Goldman has received research support from Michael J Fox Foundation. The institution of Dr. Goldman has received research support from US Department of Defense. The institution of Dr. Goldman has received research support from US Veterans Administration. The institution of Dr. Goldman has received research support from National Institutes of Health. The institution of Dr. Goldman has received research support from Health Resources and Services Administration. The institution of Dr. Goldman has received research support from American Academy of Pediatrics. Dr. Goldman has received personal compensation in the range of $100,000-$499,999 for serving as a Professor with University of California San Francisco. Dr. Goldman has received personal compensation in the range of $100,000-$499,999 for serving as a Staff Physician with San Francisco Veterans Affairs Health Care System.
Jeffrey G. Klingman, MD (The Permanente Medical Group)	Dr. Klingman has nothing to disclose.
Raymond Y. Lo, MD	Dr. Lo has nothing to disclose.
Connie C. Marras, MD (Toronto Western Hospital)	Dr. Marras has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurocrine Biosciences. The institution of Dr. Marras has received research support from Theravance Inc. The institution of Dr. Marras has received research support from Centogene.
	No disclosure on file
Robin D. Fross, MD, FAAN (Retired)	No disclosure on file
Zhuqin Gu	No disclosure on file
	No disclosure on file
	No disclosure on file
Grace S. Bhudhikanok, PhD	No disclosure on file
Laurie J. Ozelius, PhD	The institution of Dr. Ozelius has received research support from NIH. Dr. Ozelius has received intellectual property interests from a discovery or technology relating to health care.
Susan B. Bressman, MD, FAAN (Mount Sinai Health System)	The institution of Dr. Bressman has received research support from Michael J Fox Foundation . The institution of Dr. Bressman has received research support from NIH .
Rachel J. Saunders-Pullman, MD (Mount Sinai Beth Israel, Neurology, Downtown Union Square)	The institution of Dr. Saunders-Pullman has received research support from NIH, Bigglesworth Family Foundation, Empire Clinical Research Investigatory Program.
Cynthia L. Comella, MD, FAAN (Rush University Medical Center)	Dr. Comella has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Ipsen. Dr. Comella has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Vima. Dr. Comella has received publishing royalties from a publication relating to health care. Dr. Comella has received publishing royalties from a publication relating to health care.
Lorene M. Nelson, PhD (Stanford University School of Medicine)	Dr. Nelson has nothing to disclose.
Stephen K. Van Den Eeden, PhD (Kaiser Permanente)	Dr. Van Den Eeden has received personal compensation for serving as an employee of Kaiser Permanente Northern California. The institution of Dr. Van Den Eeden has received research support from NIH. The institution of Dr. Van Den Eeden has received research support from Biogen. The institution of Dr. Van Den Eeden has received research support from MJFF. The institution of an immediate family member of Dr. Van Den Eeden has received research support from NIH.

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