# Dystonia Coalition- CRP 2

> **NIH NIH U54** · EMORY UNIVERSITY · 2020 · $187,951

## Abstract

ABSTRACT
Dystonia consists of involuntary movements, abnormal posturing and pain. In adults, dystonia symptoms present
in a particular region of the body and cause significant disability due to pain as well as impairment in activities of
daily living and employment. The most common subtypes begin in adults, in a specific body region. Involvement
of neck muscles (cervical dystonia) leads to abnormal head movements that make it difficult to hold the head
still for basic activities such as reading, driving, or working on the computer. Involvement of the eye region
(blepharospasm) is associated with spasms that prevent patients from seeing normally. Involvement of the larynx
(laryngeal dystonia) with spasm of laryngeal muscles leads to difficulty speaking. The current gold standard
treatment, botulinum toxin (BoNT), has limitations—painful, frequent injections due to “wearing off” of treatment
effect; expense; and expected side effects like swallowing difficulty and weakness. There is a clear therapeutic
gap in our current treatment options for focal dystonia and also a clear need for an effective novel treatment.
Testing any novel treatment is complicated because most adults with focal dystonia are treated with BoNT. This
proposal will develop an app-based patient-reported outcome (PRO) measure to prepare for future clinical trials
in the most common types of dystonia as noted above. This app-based PRO will measure changes in dystonia
symptoms over a BoNT injection cycle to characterize individual temporal responses and to determine effect
estimates for future trials. Finally, the PRO will be correlated with standard clinical rating scales currently in use.
Successful completion of this project will lead to better clinical trial readiness in dystonia.

## Key facts

- **NIH application ID:** 10025611
- **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:** $187,951
- **Award type:** 5
- **Project period:** 2009-09-30 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10025611

## Citation

> US National Institutes of Health, RePORTER application 10025611, Dystonia Coalition- CRP 2 (5U54NS116025-10). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10025611. Licensed CC0.

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