Click on the Center name for additional contact information

Administrative Center Location Natural History Study Blepharospasm Tools
Emory University Atlanta, GA

Contact Information:

H. A. Jinnah, MD, PhD
Director of the Dystonia Coalition
Department of Neurology
Woodruff Memorial Building, Ste 6305
101 Woodruff Circle
Atlanta GA, 30322

Adam Kassem
Clinical Research Cordinator
Department of Neurology
6302 Woodruff Memorial Building
101 Woodruff Circle
Atlanta GA, 30322

(Office) : 404-727-3381
(Fax) : 404-712-8576

Email : akassem@emory.edu

Investigators:

H. A. Jinnah, MD, PhD
Mahlon DeLong, MD
Marian Evatt, MD
Alan Freeman, MD
Stewart Factor, DO

Project Planning Centers Location Natural History Study Blepharospasm Tools
James Madison University Harrisonburg, VA
 
 

Contact Information:

Christy Ludlow, PhD
Leader of the Diagnostic & Measurement Tools for Spasmodic Dysphonia Study
Department of Communication Sciences and Disorders
HHS 1411, MSC 4304
800 S. Main St.
Harrisonburg, VA 22807

Investigators:

Christy Ludlow, PhD

NIH/NINDS Bethesda, MD

Contact Information:

Mark Hallett, MD
Chief
Human Motor Control Section, NINDS, NIH
NIH, Building 10, Room 7D37
10 Center Dr MSC 1428
Bethesda, MD 20892-1428

Elaine Considine, RN, BSN
Coordinator
HMCS, MNB, NINDS, NIH
10 Center Drive MSC 1428
Building 10 Room 7D-36A
Bethesda, Maryland 20892

(Office): 301-435-8518
(Fax) : 301-480-2286

Email : ConsidineE@ninds.nih.gov 

Investigators:

Codrin Lungu, MD
Mark Hallett, MD
Vesper Ramos, MD

Università delgi Studi di Bari "Aldo Moro" Bari, Italy  

Contact Information:

Giovanni DeFazio, MD, PhD
Department of Neurologic and Psychiatric sciences
Policlinico, Piazza Giulio Cesare 1
I-70124 Bari, Italy

Prof. Paolo Livrea, MD
Coordinator
Department of Neurologic and Psychiatric sciences
Policlinico, Piazza Giulio Cesare 1
I-70124 Bari, Italy

Phone : 0039 (080) 547.8511
Fax : 0039 (080) 547.8532

Email : plivrea@neurol.uniba.it

Investigators:

Davide Martino, MD, PhD
Giovanni DeFazio, MD, PhD

Universitá Degli Studi Di Roma "La Sapienza" Rome, Italy

Contact Information:

Alfredo Berardelli, MD
Department of Neurology and Psychiatry
Viale dell'università 30
00185 Rome, Italy

Phone : 39 06/4991 4700
Fax : 39 06/4991 4700

Email : alfredo.berardelli@uniroma1.it

Giovanni Fabbrini
Coordinator
Viale dell‘Università 30
00185 Rome, Italy

(Office): 39 06 4991 4074
(Fax): 39 06 5881 4074

Email:  giovanni.fabbrini@uniroma1.it

Investigators:

Alfredo Berardelli, MD

Washington University at St. Louis St. Louis, MO

Contact Information:

Joel Perlmutter, MD
Co-Director of the Dystonia Coalition; Leader of Natural History and Biorepository Studies
Department of Neurology
660 S. Euclid Ave.
Washington University School of Medicine
Campus Box 8111
St. Louis, MO 63110

Jo Wright
Coordinator
Department of Neurology
660 S. Euclid Ave.
Washington University School of Medicine
Campus Box 8111
St. Louis, MO 63110

(Office): 314-362-7148
(Fax): 314-747-3258

Email : wrightl@npg.wustl.edu

Investigators:

Archie Harmon, PhD  
Joel Permutter, MD
Randy Paniello, MD

US Clinical Centers Location Natural History Study Blepharospasm Tools
Baylor College of Medicine Houston, TX

Contact Information:

Joseph Jankovic, MD
Department of Neurology
6550 Fannin, Ste. 1801
Houston, TX 77030

Christine Hunter
Coordinator
PDCMDC
7200 Cambridge St., Ste 9A
Houston, TX  77030

(Office): 713-798-3951
(Fax): 713-798-6808

Email: chunter@bcm.edu

Investigators:

Joseph Jankovic, MD
Joohi Jimenez-Shahed, MD
Laura Marsh, MD

Beth Israel Medical Center New York, NY  

Contact Information:

Rachel Saunders-Pullman, MD, MPH
Principal Investigator
10 Union Square East, Suite 5J
New York, NY 10003

Deborah Raymond, MS, CGC
Genetics Counselor / Site Contact
10 Union Square East, Suite 5K
New York, NY 10003

(Office): 212-844-8713
(Fax): 212-844-8407

Email: draymond@chpnet.org

 

Investigators:

Rachel Saunders-Pullman, MD, MPH
Susan Bressman, MD

Beth Israel Deaconess Boston, MA  

Contact Information:

Ludy Shih, MD
Principal Investigator
Department of Neurology
330 Brookline Avenue
Boston MA 02215

Christine Ashton
Coordinator
Department of Neurology
330 Brookline Avenue
Kirstein 228
Boston MA 02215

(Office): 617-667-4746
(Fax): 617-975-5454

Email:  cashton@bidmc.harvard.edu

Investigators:

Ludy Shih MD
Daniel Tarsy, MD
David Simon MD, PhD

Booth Gardner Parkinson's Kirkland, WA  

Contact Information:

Pinky Agarwal, MD, FAAN
12039n NE 128th Street, Ste 300
Kirkland, WA 98034

Carey Gonzales
Coordinator
12039n NE 128th Street, Ste 300
Kirkland, WA 98034
(Office) 425-899-5374
(Fax) 425-899-5354
clgonzales@evergreenhealth.com

Investigators:

Pinky Agarwal, MD, FAAN

Houston Methodist Neurological Institute Houston, TX  

Contact Information:

William Ondo, MD
Principal Investigator
6560 Fannin Street, Suite 1002
Houston, Texas 77030

Chia Arif, CCRC
Sr. Clinical Research Coordinator
Movement Disorders
6560 Fannin St. Suite 1002
Houston, TX 77030
(Office): 713-363-8390
Email: carif@houstonmethodist.org

Investigators:

William Ondo, MD

Johns Hopkins University Baltimore, MD  

Contact Information:

Alexander Pantelyat, MD
Principal Investigator
600 North Wolfe St.
Baltimore, MD 21287

Aathman Swaminathan
Research Assistant
JHOC-5, 601 N. Caroline St.
Baltimore, MD 21287

(Office) 410-955-6672

Email: aswamin2@jhmi.edu

Investigators: 
Alexander Pantelyat, MD
Lahey Clinic Burlington, MA  

Contact Information:

Julie Leegwater-Kim, MD, PhD
Principal Investigator
41 Mall Road
Burlington, MA 01805

Caitlin Scopa
Coordinator
41 Mall Road
Burlington, MA 01805

(Office) 781-744-3216
(Fax) 781-744-3772

Email:  Caitlin.Scopa@lahey.org

 

Investigators:
Julie Leegwater-Kim, MD, PhD

Parkinson's and Movement Disorders Institute Fountain Valley, CA  

Contact Information:

Daniel Truong, MD
9940 Talbert Ave #204
Fountain Valley, CA 92708

Briana Bruckler
Coordinator
9940 Talbert Ave #204
Fountain Valley, CA 92708

(Office) 714-378-5021
(Fax) 714-378-5061

Email: bbruckler@pmdi.org

Investigators:

Daniel Truong, MD

Rush University Chicago, IL

Contact Information:

Cynthia L. Comella, MD
Leader of the Comprehensive Rating Tools for Cervical Dystonia Study
Department of Neurological Sciences
1725 W. Harrison Street, Suite 755
Chicago, IL 60612

Tracy Waliczek 
Coordinator
1725 W. Harrison Street, Suite 755 
Chicago, IL 60612 

(Office): 312-563-2848
(Fax): 312-563-2684

Email: Tracy_Waliczek@rush.edu

Investigators:

Cynthia L. Comella, MD
Christopher Goetz, MD
Glenn Stebbins, PhD

Sanford Health - Fargo Fargo, ND  

Contact Information:

Tanya Harlow, MD
Principal Investigator
700 1st Avenue South
Fargo, ND 58103

Destini Spaeth
Coordinator
700 1st Avenue South
Fargo, ND 58103

(Office) 701-234-4021
(Fax) 701-234-4002

Email:  Destini.Spaeth@sanfordhealth.org

Investigators:

Tanya Harlow, MD

University of Chicago Chicago, IL  

Contact Information:

Tao Xie, MD, PhD
5841 S. Maryland – MC2030
Chicago, IL 60637

Breanna Bertacchi
Coordinator
5841 S. Maryland – MC2030
Chicago, IL 60637

(Office) 773-834-1688
(Fax) 773-702-5651

Email:  bbertacchi1@neurology.bsd.uchicago.edu

Investigators:

Tao Xie, MD, PhD

University of Cincinnati Cincinnati, OH  

Contact Information:

Alberto Espay, MD, MSc
Principal Investigator
Movement Disorders Center 
Department of Neurology

Katie Krier and Ben Wissel
Coordinator
Movement Disorders Center 
Department of Neurology
260 Stetson Street, Suite 2300
Cincinnati, Ohio 45219-2319

(Katie Office): 513-558-0169
(Ben Office): 513-919-9618 
(Fax) 513-558-7015 

Email:  Krierci@ucmail.uc.edu
wisselbd@mail.uc.edu

Investigators:

Alberto Espay, MD, MSc

University of Colorado Aurora, CO

Contact Information:

Brian D. Berman, MD, MS
University of Colorado Denver School of Medicine
Department of Neurology, Mail Stop B-185
12631 E. 17th Avenue
Aurora, CO 80045

Erika Shelton
Coordinator
Movement Disorders Clinic
University of Colorado Denver
MS F-727, 1635 Aurora Ct.
Aurora, CO 80045

(Office): 303-724-5865
(Fax): 303-724-2212

Email: erika.shelton@ucdenver.edu

Investigators:

Brian D. Berman, MD, MS

University of Florida Gainesville, FL  

Contact Information:

Irene Malaty, MD
Department of Neurology
Tyler's Hope Center for Comprehensive Dystonia Care 
Room L3-100 100 
South Newell Drive
Gainesville, FL 32610

Amanda Fessenden
Coordinator
Department of Neurology
3450 Hull Rd, 4th Flr
Gainesville, FL 32607

(Office): 352-294-5434
(Fax): 352-294-5409

Email: amanda.fessenden@neurology.ufl.edu 

Investigators:

Irene Malaty, MD
Kelly Foote, MD
Michael Okun, MD

University of Iowa Iowa City, IA  

Contact Information:

Ergun Uc, MD
Department of Neurology, UIHC
2-RCP Pavilion
200 Hawkins Drive
Iowa City, IA 52242

Jeri Sieren, RN
Coordinator
Department of Neurology/2RCP
200 Hawkins Drive
Iowa City, IA  52242

(Office): 319-356-8744
(Fax): 319-356-8323

Email:  Jeri-sieren@uiowa.edu

Investigators:

Ergun Uc, MD 
Robert Rodnitzky, MD
Teri Thomsen, MD, JD

University of Maryland Baltimore, MD  

Contact Information:

Stephen Reich, MD
Department of Neurology 
110 S. Paca Street, 3rd floor
Baltimore, MD 21201

Karen Callison
Coordinator
110 S. Paca Street, 3rd floor
Baltimore, MD 21201

(Office): 410-328-4892
(Fax): 410-328-0167

Email:  kcallison@som.umaryland.edu

Investigators:

Karen E. Anderson, MD
Paul Fishman, MD, PhD
Renzo Figari Jordan, MD
Stephen G. Reich, MD
Bradley Robottom, MD
Lisa M. Shulman, MD

University of New Mexico Albuquerque, NM  

Contact Information:

Sarah Pirio Richardson, MD
Department of Neurology
1 University of New Mexico
MSC10 5620
Albuquerque, NM 87113-0001

Ashley Wegele
Coordinator
Department of Neurology
1 University of New Mexico
MSC10 5620
Albuquerque, NM 87113-0001

(Office): 505-272-8740
(Fax): 505-272-6692

Email:  awegele@salud.unm.edu

Investigators:

Sarah Pirio Richardson, MD

University of Pennsylvania Philadelphia, PA  

Contact Information:

Andres Deik, MD
Principal Investigator
330 S. 9th St., 3rd Floor
Philadelphia, PA 19107

Katorah Williams
Site Contact
330 S. 9th St., 3rd Floor
Philadelphia, PA 19107
Office: 215-829-5299
Email: Katorah.williams@uphs.upenn.edu

Investigators:

Andres Deik, MD

University of Rochester Rochester, NY  

Contact Information:

Richard Barbano, MD, PhD
919 Westfall Road, Bldg C, Ste 220
Rochester, NY 14618

Michael Bull
Coordinator
919 Westfall Road, Bldg C, Ste 220
Rochester, NY 14618

(Office): 585-275-2367
(Fax): 585-341-7510

Email: MichaelT_Bull@urmc.rochester.edu

Investigators:

Richard Barbano, MD, PhD
Jonathan Mink, MD, PhD

University of Tennessee Memphis, TN  

Contact Information:

Mark S. LeDoux, MD, PhD
Principal Investigator
Department of Neurology
855 Monroe Avenue, Suite 415 Link Building 
Memphis, TN

Misty Thompson, PhD
Research Coordinators
Department of Neurology
University of Tennessee Health Science Center
855 Monroe Ave, Link Building Suite 415
Memphis, TN 38163

(Office): 901-448-6180

Email: mthomp82@uthsc.edu

Investigators:

Mark S. LeDoux, MD, PhD

University of Texas Southwestern Dallas, TX  

Contact Information:

Pravin Khemani, MD
Principal Investigator
5323 Harry Hines Blvd, Ste J3.134
Dallas, TX  75390

Ashley Gerald, MA
Coordinator
5323 Harry Hines Blvd, Ste J3.134
Dallas, TX  75390

(Office): 214-648-0212
(Fax): 214-648-8540

Email: Ashley.Gerald@utsouthwestern.edu

Investigators:
Pravin Khemani, MD
Virginia Commonwealth University Richmond, VA  

Contact Information:

Claudia Testa, MD, PhD
Principal Investigator
Department of Neurology
P.O. Box 980539
Richmond, VA 23298-0539

Ginger Norris, MGC
Research Coordinator
Department of Neurology
P.O. Box 980539
Richmond, VA  23298-0539

(Office): 804-662-5300
(Fax): 804-828-0406

Email: vwnorris@vcu.edu

Investigators:

Mark Baron, MD
Leslie Cloud, MD, MSc
Claudia Testa, MD, PhD 
Scott Vota, MD

Wake Forest Health Sciences Winston-Salem, NC  

Contact Information:

Allison Brashear, MD
Department of Neurology
Medical Center Boulevard
Winston Salem, NC 27157

Charlotte Miller, BS, CCRC
Coordinator
Department of Neurology
Medical Center Boulevard
Winston Salem, NC 27157

(Office): 336-716-9056 
(Fax): 336-716-2842

Email: chmiller@wakehealth.edu

Investigators:

Allison Brashear, MD
Ihtsham Haq, MD
Mustafa Siddiqui, MD
Francis Walker, MD

Australian Clinical Centers Location Natural History Study Blepharospasm Tools
Westmead Hospital Westmead, New South Wales, Australia  

Contact Information:

Victor Fung, MD
Principal Investigator
Neurology Department
Level 1, Block AB
Westmead  NSW 2145
Australia

Jane Griffith
Coordinator
Neurology Department
Level 1, Block AB
Westmead  NSW 2145
Australia

(Office): +61298456793
(Fax):  +61296356684

Email: jane.griffith@health.nsw.gov.au

Investigators:
Victor Fung, MD
Canadian Clinical Centers Location Natural History Study Blepharospasm Tools
Centre hospitalier de l'Université de Montréal Montréal, Quebec, Canada  

Contact Information:

Sylvain Chouinard, MD, FRCPc
Centre d'excellence en neurosciences de l'Université de Montréal-CENUM
Centre de recherche du CHUM - Hôpital Notre-Dame
1560 Sherbrooke Est
Pavillon Deschamps, GR-1181
Montreal, Quebec, Canada  H2L 4M1

Monica Beland
Coordinator
Laboratoire Dr Guy A Rouleau
Centre d'excellence en neurosciences de l'Université de Montréal-CENUM
Centre de recherche du CHUM - Hôpital Notre-Dame
1560, Sherbrooke Est
Pavillon Deschamps, Porte GR-1188
Montréal, Quebec, Canada  H2L 4M1

(Office): 514-890-8000 # 26512
(Fax): 514-412-7139

Email: monica.beland.chum@sss.gouv.qc.ca

Investigators:

Sylvain Chouinard, MD, FRCPc

University of Alberta Edmonton, Alberta, Canada  

Contact Information:

Paul McCann, BA, BScN, RN, MPH 
Department of Medicine 
2E3.32  WMC
University of Alberta Hospital
8440 -112 Street
Edmonton, Alberta 
Canada T6G 2B7

(Office): (780) 407-7497
(Fax): (780) 407-1325

Email: paul.mccann@albertahealthservices.ca

Investigators:

Oksana Suchowersky, MD

University of Toronto Toronto, Ontario, Canada

Contact Information:

Susan Fox, MD, PhD
Movement Disorder Clinic and Department of Psychiatry
Toronto Western Hospital, 399
Bathurst St, Toronto, ON Canada. M5T 2S8

Brandon Rothberg
Coordinator
Movement Disorders Centre
Toronto Western Hospital
McL 7-445
399 Bathurst St
Toronto, Ontario
M5T 2S8

(Office): 416-603-5800 ext 3120
(Fax): 416-603-5004

Email: brothber@uhnresearchca

Investigators:

Robert Chen, MD, MA, MSc
Tony Lang, MD
Susan Fox, MD, PhD
Mateusz Zurowski, MD

European Clinical Centers Location Natural History Study Blepharospasm Tools
Université Pierre et Marie Curie-Paris 6, Groupe Hospitalier Pitié-Salpêtrière Paris, France  

Contact Information:

Marie Vidailhet, MD
Department of Neurology
Groupe Hospitalier Pitié-Salpêtrière
Paris, Bd de l’Hopital
F-7513, France 

Marta Ruiz
Assistant
Department of Neurology
Groupe Hospitalier Pitié-Salpêtrière
Paris, Bd de l’Hopital
F-7513, France 

(Office):  + 33.1.42.16.27.48 
(Fax): + 33.1.42.16.24.74 

Email: marta.ruiz@mssm.edu

Investigators:

David Grabli, MD, PhD
Emmanuel Roze, MD, PhD 
Marie Vidailhet, MD

University College London - Institute of Neurology London, United Kingdom  

Contact Information:

Kailash Bhatia, MD, DM, FRCP
Sobell Department of Movement Neuroscience 
Queen square 
London Wc1N 3BG 
England 

(Office):  + (020) 7837.3611 

Email: kbhatia@ion.ucl.ac.uk

Investigators:

Henry Houlden, MD, MRCP, PhD 
John Hardy, FRS
John Rothwell, PhD
Kailash Bhatia, MD, DM, FRCP

University Hospital Schleswig-Holstein  Lübeck, Germany  

Contact Information:

Christine Klein, MD
Department of Neurology
Ratzeburger Allee 160, 23538 
Luebeck, Germany

Investigators:

Christine Klein, MD
Johann Hagenah, MD

Partnering Groups Location    
Data Management and Coordinating Center (DMCC); University of South Florida Tampa, FL    

Contact Information:

Brandy Hutchinson
Research Project Manager

Health Informatics Institute 
3650 Spectrum Blvd; Suite 100
Tampa, FL 33612

(Office): 813-396-9756
(Fax): 813-910- 5997

Email: Brandy.Hutchinson@epi.usf.edu

Investigators:

Jeffery Krischer, PhD, Principal Investigator

NINDS Repository at Coriell Camden, NJ    

Contact Information:

Cristian Perez, PhD
Principal Investigator
403 Haddon Avenue
Camden, NJ  08103

Jose Santana
Project Coordinator
403 Haddon Avenue
Camden, NJ  08103

Email: jsantana@coriell.org

 
Dystonia Study Group (DSG) Chicago, IL    

Contact Information:

Cynthia Comella, MD
Rush University Medical Center
1725 West Harrison Street
Chicago, IL 60612