Table 5.
Pilot projects supported with Dystonia Coalition data or materials.
| Recipient | Institution | Year of request | Topic | Status |
|---|---|---|---|---|
| Neepa Patel, MD; J. Jankovic, MD | Baylor College of Medicine, Houston, TX, USA | 2012 | Sensory tricks in cervical dystonia | (54, 55) |
| M. Zaribaf; G. Kilic-Berkmen, Ph.D. | Emory Univ, Atlanta, GA, USA | 2012, 2019 | Family structures in dystonia | In progress |
| A. Shaikh, MD | Emory Univ, Atlanta, GA, USA | 2013, 2016 | Tremor in dystonia | (56–60) |
| T. Douglas, Ph.D.; G. Kilic-Berkmen, Ph.D. | Emory Univ, Atlanta, GA, USA | 2013, 2019 | Patterns of segmental and cervical dystonia | In progress |
| H. Sarva, MD; S. Bressman, MD | Mt Sinai, New York City, NY, USA | 2014 | Long term clinical outcomes in DYT1 dystonia | In progress |
| S. Norris, MD | Washington Univ, St. Louis, MO, USA | 2014, 2016 | Clinical characteristics of cervical dystonia | (61) |
| J. Junker, MD | Univ Lubeck, Germany | 2015 | Non-motor features of dystonia | (62) |
| J. Junker, MD; N. Bruggeman, MD | Univ Lubeck, Germany | 2015-2017 | Alcohol-responsiveness in Dystonia | (63) |
| J. Junker, MD | Univ Lubeck, Germany | 2015, 2017 | Quality of life in dystonia and its predictors | (9) |
| A. Shaikh, MD | Case Western Reserve Univ, Cleveland, OH, USA | 2015 | Quantitative analysis of dysphonia and voice tremor | In progress |
| S. Pirio-Richardson, MD | Univ New Mexico, Albuquerque, NM, USA | 2015, 2017 | Patterns of medication use | (14, 31) |
| L. Scorr, MD | Emory Univ, Atlanta, GA, USA | 2016, 2020 | Descriptive study of oromandibular dystonia | Manuscript submitted |
| Y. Sun, Ph.D. | Emory Univ, Atlanta, GA, USA | 2016 | Genome-wide association study for cervical dystonia | Manuscript in revision |
| Y. Sun, Ph.D. | Emory Univ, Atlanta, GA, USA | 2016 | Metabolomics in cervical dystonia | (64) |
| N. Patel, MD | Henry Ford Health System, Detroit, MI | 2016 | Substance abuse in dystonia | (65) |
| A. Espay, MD | Univ Cincinnati, Cincinnati, OH, USA | 2016 | Tremor in cervical dystonia | (57) |
| L. Froescheke, Ph.D. | Elmhurst College, Elmhurst, IL, USA | 2016 | Phonatory breaks in spasmodic dysphonia | (66) |
| A. Morris, MD | Washington Univ, St. Louis, MO, USA | 2016–2018 | Acoustic quantification of laryngeal dystonia | (67) |
| B. Berman, MD | Univ Colorado, Denver, CO, USA | 2016, 2017 | Psychiatric symptoms in dystonia | Merged with related project |
| C. Klein, MD Ph.D. | Univ Lubeck, Germany | 2017 | Penetrance and risk modifying variants in dystonia | In progress |
| D. Peterson, Ph.D. | UCSD and Salk, LA Jolla, CA, USA | 2017 | Objective phenotyping in cervical dystonia | In progress |
| H. Sarva, MD | Cornell, New York City, NY, USA | 2017 | Gait in blepharospasm | In progress |
| V. Fung, MD; F. Chang, MD | Westmead Hospital, Australia | 2017 | Torticollis in hemidystonia | In progress |
| S. Cho, MD; M. Hallett, MD | NINDS, Bethesda, MD, USA | 2017 | Sensory tricks in blepharospasm | Merged with related project |
| B. Berman, MD | Univ Colorado, Denver, CO, USA | 2017 | Patterns of spread in dystonia | (68) |
| S. Norris, MD | Washington Univ, St. Louis, MO, USA | 2018, 2020 | Spread of limb dystonia | (12) |
| D. Martino, MD | Univ Calgary, Canada | 2018 | Demographic and clinical predictors of spread in adult-onset idiopathic dystonia | In progress |
| M. Powell, Ph.D. | Vanderbilt Univ, Nashville, TN, USA | 2019 | Artificial intelligence for diagnosing, and monitoring laryngeal dystonias | In progress |
| C. Klein, MD Ph.D. | Univ Lubeck, Germany | 2019 | Genome-wide association study for dystonia | In progress |
| N. Harrison, MD; S. Norris, MD | Washington Univ, St. Louis, MO, USA | 2019 | Shoulder dystonia in upper extremity vs. cervical dystonia | In progress |
| A. Cotton; H. A. Jinnah, MD Ph.D. | Emory Univ, Atlanta, GA, USA | 2019 | Patient-reported outcomes vs. clinical rating scales | In progress |
| E. Reid, Ph.D. | Loma Linda Univ, Loma Linda, CA | 2019 | Phonetic analysis of spasmodic dysphonia | In progress |
| K. Lohmann, MD | Univ Lubeck, Germany | 2020 | Large-scale sequencing of dystonia | In progress |
| K. Peall, MD | Cardiff Univ, United Kingdom | 2020 | Predictive models for phenotypic subgroups across the dystonias | Manuscript submitted |
| L. Scorr, MD | Emory Univ, Atlanta, GA, USA | 2020 | A descriptive study of blepharospasm | In progress |
| M. Sousa, MD; S. Fox, MD | Univ Toronto, Canada | 2020 | Anxiety in cervical dystonia | In progress |
| M. Tosin, Ph.D. student | Rush Univ, Chicago, IL, USA | 2020 | Head tremor in cervical dystonia | In progress |
| N. Koirala, Ph.D. | Haskins Lab, New Haven, CT, USA | 2020 | Machine learning algorithms for detection of dystonia | In Progress |