2023

DC 11th Annual Meeting

May 31, 2023, Dublin, Ireland
The agenda will be provided soon

 

6^th International Dystonia Symposium

June 1-3, 2023, Dublin, Ireland
Early registration: October 3^rd
The symposium is designed to provide a comprehensive overview of important scientific advances in the field and stimulate discussion within and across disciplines.
Agenda

 

Pilot Project Program (PPP) and Career Development Award (CDA) 

2023 awards will be announced in Dec 2022.

 

2022

DC 10th Annual Meeting (2-day Webinar)

Date: 16-17 May 2022
Agenda

Watch a Meeting Recording

Day 1

• Jinnah: Welcome & Goals
• Comella: Botulinum toxins
• Jinnah: Oral medications
• Shukla: Surgical interventions
• Defazio: Rating scales
• Peterson: Objective measures
• Richardson: Add on therapies
• Q&A

Day 2

• Jinnah: Welcoming remarks
• Jinnah: PPP
• Cruchaga: PPP awardee
• Comella: CDA
• Parlakturk: CDA awardee
• Hieshetter & Kuman: PAG
• Jinnah: Summary
• Q&A

Pilot Project Program (PPP) and Career Development Award (CDA) 

• Past Pilot Project Program Recipients
• Past Career Development Award Recipients

2021

DC 9th Annual Meeting

This meeting has been planned to inform attendees about clinical trial readiness and the Dystonia Coalition’s contributions to this area.

Day 1: 1 June 2021

Link to the agenda Link to the webinar recording

Speaker Slides (pdf)

• HA Jinnah: Introduction
• JS Perlmutter: What Do We Mean by "Clinical Trial Readiness"?
• S Pirio Richardson: What Types of Clinical Trials Do We Need to be Ready For?
• HA Jinnah: What Types of Therapeutic Agents Are Ready for Testing?
• M Hallet: Can We Clearly Define Appropriate Patient Populations for Trials?
• D Peterson: Do We Have Adequate Measurement Tools to Assess Outcomes?
• C Cruchaga: Can we Develop Biomarkers for Dystonia?

Day 2: 2 June 2021

Link to the agenda Link to the webinar recording

Speaker Slides (pdf)

• S Pirio Richardson: Pilot Project: Goals & Selection Criteria
• M Hammer: Non-Invasive Mechanosensory Perturbation to Test Voice-Related Motor and Somatosensory Cortical Responses in Spasmodic Dystonia
• C Comella: Career Development Program: Goals & Selection Criteria
• L Rocchi: Repetitive somatosensory stimulation in focal hand dystonia: a study on inhibitory circuitry plasticity of the somatosensory system and primary motor cortex
• J Hieshetter & K Kuman: Patient Advocacy Group Update & Plans
• HA Jinnah: Dystonia Coalition: Where are we now & where are we going?

Patient Advocacy Group Webinar: the Dystonia Coalition: 8 June 2021

A conversation with the Director, Dr. H. A. Jinnah, MD, PhD Link to webinar recording

2020

New DC Funding Cycle The DC has been funded for another 5 years (2019-2024)!

Meetings

• DC 8^th Annual Meeting Webinar: June 3, 2020. This meeting has been planned to inform attendees about the Dystonia Coalition structure and how to be involved, past achievements, and new projects. Link to the agenda Link to webinar recording Speaker slides Link to Introduction: H. A. Jinnah Link to Natural History (NH) Project: J. S. Perlmutter Link to Biobank (BB) Project: Carlos Cruchaga Link to Patient-Centered Outcomes Project: S. Pirio Richardson Link to Objective Measures (OM) Project: D. Peterson Link to Patient Advocacy Groups (PAGs): K. Kuman & J. Hieshetter

Pilot Project Program (PPP) and Career Development Award (CDA)

• Link to previous PPP and CDA awardees

2016

Seventh Dystonia Coalition Meeting: 3-4 March 2016, Rockville, MD

• Meeting Agenda: Download agenda [pdf]

4^th Conference on Clinical Research for Rare Diseases:  3 November 2016, Washington, DC

2014

Sixth Annual Dystonia Coalition Meeting Agenda: 6-7 November 2014, St. Louis, MO

2013

Fifth Annual Dystonia Coalition Meeting Agenda: 16-17 October 2013, Atlanta, GA

2012

Summary and Highlights of the 5th International Dystonia Symposium

Fourth Annual Dystonia Coalition Meeting: 13-14 September 2012, Chicago, IL

2011

Caution about Getting Information from the Internet (The Dystonia Coalition agrees with the recommendation in a letter to the Editor of The New England Journal of Medicine (September 22, 2011))

Focal Hand Dystonia study seeks volunteers: Determining the Efficacy of an Intervention in Focal Hand Dystonia with rTMS and Sensorimotor Retraining

2010

Bachmann Strauss Outlook: Dystonia Coalition Announcement (January 2010) 11NE 

Clinical Research Network for Dystonia: The Dystonia Coalition (April/May 2010)

Second Annual Dystonia Coalition Meeting: 21-22 October 2010, Atlanta GA

• Meeting Agenda
• Group Photo
• Dystonia Coalition Provides Two More Career Development Awards:
  • Mateusz Zurowski, MD, MSc, FRCPC: Psychiatric Assessments Of Patients With Cervical Dystonia, Funded In Partnership With The DMRF
  • Alberto Espay, MD, MSc: Sensory And Emotional Processing In Psychogenic Dystonia: A Functional Magnetic Resonance Imaging Study, Funded In Partnership With The DMRF
• Dystonia Coalition Awards Two More Pilot Studies:
  • Kailash Bhatia, MD,DM, FRCP: DYT6 Dystonia – A Window To The Mechanisms Of Primary Dystonia?
  • Emmanuel Roze, MD, PhD: Cerebellum And Cortical Plasticity: The Case Of Focal Dystonia

Bachmann-Strauss Dystonia and Parkinson’s Foundation Think Tank: 1-2 November 2010, New York, NY

2009

NIH Announces Expansion of Rare Diseases Clinical Research Network (5 October, 2009)

NIH Grant Supports Coalition to Develop Better Dystonia Treatments (6 October, 2009)

NIH Awards New Grant to Develop Better Treatments for Focal Dystonias (October 2009)

Dystonia Coalition – Office of Rare Disease Research (October 2009)

NIH Awards New Grant to Develop Better Treatments for Focal Dystonias (9 November, 2009)

Research-Dystonia Coalition (November 2009)

The Voice: Inaugural Meeting of the Dystonia Coalition (December 2009)

A New Research Partnership (December 2009)

Inaugural Dystonia Coalition Meeting (5 November 2009) 

• Meeting Agenda
• Group Photo
• First Career Development Award Goes To Maren Carbon-Corell To Develop A Marker For Dystonia Based On FMRI Patterns In The Brain, Funded In Partnership With The DMRF
• Dystonia Coalition Awards First Three Pilot Studies:
  • Mark LeDoux, MD, PhD: THAP1 Sequence Variants In Dystonia 
  • Giovanni DeFazio, MD, PhD: Development And Validation Of Clinical Diagnostic Guidelines And A Novel Severity Rating Scale For Primary Blepharospasm, Funded In Partnership With The BEBRF
  • Steve Frucht, MD: A Multicenter, Exploratory, Double Blind, Placebo Controlled, Dose Escalation Study Of Sodium Oxybate As A Symptomatic Treatment For Idiopathic Cervical Dystonia, Funded In Partnership With The NSTA