# Dystonia Coalition

> **NIH NIH U54** · EMORY UNIVERSITY · 2022 · $1,356,047

## Abstract

PROJECT SUMMARY
The main goal of the Dystonia Coalition is to provide the foundations necessary for the development and
evaluation of novel treatments for the isolated dystonias, previously known as “primary” dystonias. The most
common subtypes include cervical dystonia (also known as torticollis), blepharospasm and related craniofacial
dystonias (sometimes called Meige syndrome), laryngeal dystonia (also known as spasmodic dysphonia), and
limb dystonias (e.g., writer’s cramp, musician’s dystonias, foot dystonia). Also included are various combinations
such as segmental and multifocal dystonias, and less common generalized dystonias affecting broader areas
the body. Although there have been dramatic advances in understanding the basic biology of dystonia, they
have not yet been translated into effective treatments for patients. The development of new treatments has been
hampered by incomplete knowledge regarding the natural history of these disorders and variations in responses
to existing therapies, a lack of objective tools to monitor severity, and the absence of useful biomarkers. The
Dystonia Coalition has made great progress in addressing many translational barriers during prior funding cycles.
The current renewal application leverages this success and targets ongoing challenges in the translational effort.
It is organized into Administrative Unit, a Pilot Projects Program, a Career Enhancement Program, and four
Clinical Research Projects. The Clinical Research Projects each focus on key unmet needs in the development
of new therapies. Project 1 is a natural history study of all subtypes of isolated dystonias, and acts as a repository
for distribution of data to investigators. This project provides essential baseline data for any novel therapy that
proposes to reduce progression. Project 2 addresses individual and temporal variations in response to existing
therapy with botulinum toxin. Because these treatments are standard of care for many types of dystonia,
delineating these sources of variation provides baseline data essential for any novel add-on therapy that
proposes to mitigate symptoms. Project 3 focuses on the development of novel technologies as objective tools
for assessing the severity of the most common subtypes of dystonia. These tools are valuable outcome
measures for clinical trials. Project 4 functions as a centralized biorepository resource for collection of
biomaterials for all subtypes of dystonia and implements preliminary studies of potential relevant biomarkers.
These materials may then be used to explore potential diagnostic and severity biomarkers for different types of
dystonia. To facilitate rapid recruitment for all of these projects and to encourage collaboration, the Dystonia
Coalition has maintained a unique open-door policy that permits qualified centers to contribute to specific projects
according to their special interests and abilities. During prior funding cycles, the Dystonia Coalition started with
14 site...

## Key facts

- **NIH application ID:** 10468924
- **Project number:** 5U54NS116025-12
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** HYDER A JINNAH
- **Activity code:** U54 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $1,356,047
- **Award type:** 5
- **Project period:** 2009-09-30 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10468924

## Citation

> US National Institutes of Health, RePORTER application 10468924, Dystonia Coalition (5U54NS116025-12). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10468924. Licensed CC0.

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