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Dystonia Coalition

Dystonia Coalition Mission Statement

The mission of the Dystonia Coalition (DC) is to advance clinical and translational research in the dystonias to improve our understanding of its clinical manifestations and pathogenesis, and to find better treatments and a cure. The DC will focus on cooperative planning, implementation, conduct, and reporting of clinical and translational studies, including clinical trials. The DC also is interested in educating professionals and the public by providing scientific and medical information about dystonia. The DC is committed to the principles of open communication, scientific peer review, full disclosure of conflicts-of-interest, and democratic governance of its activities.

Dystonia Coalition Sponsorship

Sponsorship for DC programs comes from several sources. Sponsorship is not tied to a single grant or source of funding. Sponsorship comes in part from NIH funding, PAGs, industry sources, professional societies, and other sources. While sponsorship comes from many sources, the majority of funding is currently provided by NIH under grant award U54 NS116025, with a project period through June 30, 2024.

Dystonia Coalition Membership

The DC is a collaboration of medical researchers and patient advocacy groups (PAGs), one of the consortia of the Rare Diseases Clinical Research Network (RDCRN) supported by The National Institute of Neurological Disorders & Stroke (NINDS) and The Division of Rare Diseases Research Innovation (DRDRI) in the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH). More information can be found online on the DC website.

Current DC members include investigators at sites that participate in DC projects and/or committees. These sites are divided into three categories. Project Centers are sites that take responsibility for organizing and conducting Main Clinical Research Projects outlined below. Project centers are not permanent but may change as projects are completed and new ones are started. Recruiting Centers are sites where research subjects may be recruited for Main Clinical Research Projects. Recruiting centers must have sufficient expertise and ability to recruit patients for studies, with quotas for membership determined by individual studies. Affiliate Centers are sites that want to keep informed of events and opportunities, but do not actively recruit subjects for Main Clinical Research Projects. Affiliate Centers may become Recruiting Centers and vice versa. All centers may participate in research projects, submit proposals for new projects, or nominate candidates for career development awards. The DC has an open-door policy in which new investigators and institutions may be invited to join at any time. Investigators interested in membership should contact the DC program manager (dystoniacoalition@emory.edu).

Appendix 1: Memberships

The Dystonia Coalition

PI: HA Jinnah, MD, PhD
Co-PI: Joel Perlmutter, MD
NINDS Representative: Hyun Joo Cho, MD
ORDR/NCATS Representative: Tiina Urv

DC Program Manager: Gamze Kilic-Berkmen, PhD (404-727-3381, dystoniacoalition@emory.edu)

Chair and Director of the DC: HA Jinnah, MD, PhD
Chair of the Dystonia Natural History Project: Joel Perlmutter, MD
Chair of the Dystonia Patient-Centered Outcomes Project: Sarah Pirio Richardson, MD
Chair of the Objective Measures of Dystonia Project: David Peterson, PhD
Chair of the Dystonia Biobank Resource Project: Carlos Cruchaga, PhD
Chair of the Pilot Projects Program: HA Jinnah, MD, PhD
Chair of Career Development Program: Cynthia Comella, MD
Patient Advocacy Group Representative(s): Kim Kuman and Janet Hieshetter
NINDS Representative: Hyun Joo Cho, MD
DRDRI/NCATS Liaison: Tiina Urv

Anthony Lang, MD
Marie Vidailhet, MD
Alberto Albanese, MD
Gerald Berke, MD
Marina Tijssen, MD
Mark Hallett, MD
NINDS Science Officer: Hyun Joo Cho, MD
DRDRI/NCATS Liaison: Tiina Urv

Chair: HA Jinnah, MD, PhD
Rotating Member(s): Joel Perlmutter, MD
NINDS Representative: Hyun Joo Cho, MD
DRDRI/NCATS Liaison: Tiina Urv
Patient Advocacy Group Representative(s): Mark Hallett, MD; Michael Okun MD; Jan Teller, PhD;

Chair: Cynthia Comella, MD
Co-Chair and Patient Advocacy Group Representative: Jan Teller, MD
Members: Alberto Albanese MD, Gerald Berke MD, Anthony Lang MD, Marina Tijssen MD, Marie
Vidailhet MD
NINDS Representative: Hyun Joo Cho, MD
DRDRI/NCATS Representative: Tiina Urv

Chair: Joel Perlmutter, MD
DC PI: HA Jinnah, MD, PhD
NINDS Science Officer: Hyun Joo Cho, MD

Chair: Sarah Pirio Richardson, MD
DC PI: HA Jinnah, MD, PhD
NINDS Science Officer: Hyun Joo Cho, MD

Chair: David Peterson, PhD
DC PI: HA Jinnah, MD, PhD
NINDS Science Officer: Hyun Joo Cho, MD

Project PI: Carlos Cruchaga, PhD
DC PI: HA Jinnah, MD, PhD
NINDS Science Officer: Hyun Joo Cho, MD