# Dystonia Coalition- CRP 1

> **NIH NIH U54** · EMORY UNIVERSITY · 2020 · $225,348

## Abstract

ABSTRACT: The isolated dystonias (previously known as primary dystonias) are a diverse group of rare
disorders characterized by involuntary, sustained muscle contractions that may cause twisting and repetitive
movements, sustained movements or abnormal postures. These isolated dystonias typically begin in different
body parts including the face, neck, larynx or limbs but the risk of spread and the natural history of these
disorders mostly come from retrospective reviews limited by relatively few patients seen at any one clinical site.
The primary purpose of this project is to extend our prospective natural history studies of 4 isolated dystonias:
blepharospasm (BSP) that begins in the upper face; cervical dystonia (CD) that begins in the neck; laryngeal
dystonia (LD) that begins in the larynx; and limb dystonia that begins in the one of the limbs. This Natural
History project will use web-based tools already developed for the Dystonia Coalition (DC) to collect
demographic, clinical, and video data from existing sites in the U.S.A., Canada, Australia, Italy, Germany,
France and the U.K. Recruitment for each subtype of isolated dystonia will be capped to ensure broad
distribution of all subtypes adequate to address our primary questions. We will collect data via a web-based
secured system that has met the requirements of our U.S. and international recruiting sites. Although the
primary purpose of this project is to determine the natural history of these isolated dystonias, we also provide
easy access to data to facilitate collaborations through data sharing with investigators within and external to
the DC, as we have successfully done. Past recruitment combined the efforts of 37 international sites to
collect demographic, clinical, rating scale, video and biosample data from more than 3000 people with isolated
dystonias. We have substantial preliminary data on the natural history of the isolated dystonias with the
greatest amount of data from people with CD. This proposal for “Natural History of the Isolated Dystonias” will
extend and enhance these studies. We propose 5 specific aims: 1) determine the natural history of BSP; 2)
determine the natural history of CD; 3) determine the natural history of LD; 4) determine the natural history of
limb dystonia; and 5) facilitate sharing of data with investigators within and external to the DC. This project
permits studies of the different isolated dystonias and facilitates comparisons across these disorders. We also
will continue to partner with private patient advocacy groups to support data collection at collaborating sites.

## Key facts

- **NIH application ID:** 10025609
- **Project number:** 5U54NS116025-10
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** HYDER A JINNAH
- **Activity code:** U54 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $225,348
- **Award type:** 5
- **Project period:** 2009-09-30 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10025609

## Citation

> US National Institutes of Health, RePORTER application 10025609, Dystonia Coalition- CRP 1 (5U54NS116025-10). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10025609. Licensed CC0.

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