Great Accomplishments in Clinical Research

Clinical research has developed and been honed almost to a state of perfection over the decades. Let’s track the changes and improvements seen in the area of dystonia here together.


The DYT1 gene discovery for early onset dystonia led to new directions for research in terms of understanding the mechanism of dystonia, as well as the potential development of new treatments.

The 3rd International Dystonia Symposium featured increasing data on dystonia pathophysiology and genetics. Proceedings from each major scientific dystonia symposium were published as highly influential text books to serve as educational resources for young investigators and clinicians.

The DMRF supported the development of the Dystonia Study Group to establish infrastructure for major clinical studies. Clinicians had the opportunity to share their dystonia experiences and improve delivery of dystonia treatment.

As the field of dystonia grew more sophisticated, DMRF scientific meetings began to focus on more specific areas of research allowing for discussion of new ideas and directions.


The DMRF and the National Institute of Neurological Disorders & Stroke (NINDS) organized two major workshops setting the research agenda for years to come: "From Gene to Function in Dystonia” (2001) and “Dystonia: Recent Advances and Future Directions.” (2006); the 2001 workshop brought together researchers with diverse backgrounds to address questions regarding the protein torsinA, its structure and function, and how the DYT1 mutation results in dystonia, plus examining current animal models and their utility to advancing dystonia research. The second workshop led to a Program Announcement calling for dystonia applications to NINDS, from which four major studies were funded to date on gender differences, rapid-onset dystonia-parkinsonism, proteins, and pathophysiology.

The establishment of the Cure Dystonia Initiative marked DMRF’s formal commitment to translational research and to proactively engaging the pharmaceutical industry in developing new treatments. The Foundation continues to meet with companies to support bringing treatments to market and encourage exploration of new compounds or repurposing existing agents for dystonia treatment.

New dystonia genes were discovered, including DYT6 and DYT16. Every dystonia gene discovered provides another clue to the disease mechanism behind dystonia, and points to another protein as a possible therapeutic target.

DMRF workshops addressed increasingly advanced translational topics, like surgical advancements, cellular functions of dystonia proteins, and targeting specific brain pathways.

Major meetings on dystonia were held, including 4th International Dystonia Symposium, which featured increasingly promising data on deep brain stimulation as a dystonia treatment. Deep brain stimulation is now considered the gold standard for treatment of severe forms of the disease.

DMRF launched a major scientific effort in partnership with BioFocus, nicknamed “Project FireSky,” to identify genes and proteins that will potentially modify the DYT1 gene mutation.

A five-year grant of $6 million from the Office of Rare Diseases Research and National Institutes of Health was awarded to establish Dystonia Coalition, uniting pre-eminent clinicians and patient organizations in clinical research for new treatments. The DMRF played an essential role in securing the grant. It serves as an administrative center to help investigators stretch funds as much as possible.


Working in partnership with an international committee of expert dystonia clinicians, the DMRF helped led the effort to update the clinical definition and classification of dystonia. This, in turn, led to a paper published in Movement Disorders: “Phenomenology and classification of dystonia: A consensus update.” Albanese A, Bhatia K, Bressman SB, Delong MR, Fahn S, Fung VS, Hallett M, Jankovic J, Jinnah HA, Klein C, Lang AE, Mink JW, Teller JK. Mov Disord. 2013 May 6.

The Dystonia Coalition was a groundbreaking research collaboration that brought together an international network of investigators, movement disorder centers, and patient organizations. The overall goal was to advance the pace of clinical research for primary focal dystonias including cervical dystonia, spasmodic dysphonia, blepharospasm, and others. In addition to serving as an administrative center for the Dystonia Coalition, the DMRF provided staff and office support to the Pilot Project Program, Career Development Awards, and annual meetings. Several representatives of the DMRF served on the Dystonia Coalition Executive Committee.

The Dystonia Coalition began funding pilot projects including the creation of a biorepository of samples available to dystonia researchers worldwide, as well as new diagnostic tools for focal dystonia. The DMRF co-funded the Dystonia Coalition Career Development Awards to further support young investigators in this field.

The 5th International Dystonia Symposium took place in 2011, in partnership with the European Dystonia Federation and Dystonia Coalition. This symposium was the most comprehensive meeting devoted to dystonia to date, representing a global interest in the disorder.

The DMRF’s ongoing research contract with BioFocus represents a ground-breaking effort to discover new drug targets and several hundred hits were identified against a library of 4,500 candidates. These hits represent proteins and genes that potentially can rescue cells from the effects of the DYT1 dystonia mutation. The DMRF and expert project advisors are analyzing the list of hits to isolate those that warrant further investigation. DMRF partnered with Tyler’s Hope for a Dystonia Cure during phase two of this project.

For several years in a row since 2010, the Department of Defense (DOD) included dystonia as a focus of its research program and funded multiple projects, including dystonia in the DOD research program opened up a previously untapped source of funding for dystonia investigators.

The DMRF hosted multiple scientific meetings including the Musician’s Summit (2012), Workshop on Designing Clinical Trials for Dystonia (2012), Myoclonus Workshop (2013), and Toward Novel Treatment Discoveries for Dystonia.

Multiple dystonia genes were discovered by DMRF-funded investigators and/or researchers, who served on the DMRF’s Medical & Scientific Advisory Council including CIZ1, ANO3, GNAL, and TUBB4A: each gene provides a potential target for new therapies.

Genetic and biochemical connections between various forms of dystonia were discovered. TorsinA, the protein once only associated with DYT1 dystonia, is now implicated in focal and myoclonic forms. The protein THAP1 may be associated with cervical dystonia, blepharospasm, spasmodic dysphonia/laryngeal dystonia, as well as others.

The DMRF continued to stimulate and support dystonia research and work alongside other dystonia organizations.

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