“Development, Validation, and Performance of the Facioscapulohumeral Muscular Dystrophy Health Index (FSHD-HI)”  ENMC meeting.  A Global FSHD Registry Framework.  Heemskerk, Netherlands.  11/20/16. 
 
“Value of Disease-Specific Patient Reported Outcome Measures In Myotonic Dystrophy.”  222 ENMC meeting.  Myotonic Dystrophy, Developing an European Consortium for Care and Therapy. Naarden, Netherlands.  7/1/2016.
 
“Making Elephants Vanish: A Journey from Discovery to Genetic Trials in Myotonic Dystrophy.”  Neuroscience Grand Rounds.  Osaka University, Japan.  4/25/16.
Myotonic Dystrophy: Lowering the Bar for Therapeutic Development in One of the World’s Most Clinically Diverse Diseases.  Wake Forrest University Neurology Grand Rounds.  10/25/16.
 
Update on Myotonic dystrophy type-2.  Myotonic Dystrophy Patient Conference.  University of Rochester.  10/15/16.
 
PRISM-SMA: Patient reported impact of symptoms in adult Spinal Muscular Atrophy.  Muscle Study Group Annual Meeting.  Salt Lake City, UT.  9/25/16.
 
DM2: Symptoms Overview and Management Strategies.  Myotonic Dystrophy Foundation Annual Conference.  Washington D.C.  9/17/16.
 
DM2: Research Update.  Myotonic Dystrophy Foundation Annual Conference.  Washington D.C.  9/17/16.
 
Myotonic Dystrophy Patient Question and Answer Session:  DM2: Symptoms Overview and Management Strategies.  Myotonic Dystrophy Foundation Annual Conference.  Washington D.C.  9/17/16.
 
PRISM-SMA: Patient Reported Impact of Symptoms in Adult Spinal Muscular Atrophy.  Anaheim, CA.  Cure SMA Research Meeting.  Clinical Science Session.  6/16/16.
 
DM Trial Endpoints Selection: Myotonic Dystrophy Health Index.  Arlington, VA.  Myotonic Dystrophy Foundation/FDA Regulatory Meeting.  9/17/2015.
Patient-Identified Disease Burden in Adult Spinal Muscular Atrophy.  Kansas City, Kansas.  Cure SMA Research Meeting. 6/19/15.
 
“The Facioscapulohumeral Dystrophy Composite Outcome Measure: 1 Year Findings.”   Katy Eichinger, Chad Heatwole, Susan Heininger, Rabi Tawil, Jeff Statland.  FSH Society FSHD International Research Consortium Workshop.  2016.
 
“Patient Preferences on the Use of Three, Patient-Reported Outcome Measures of Health in Myotonic Dystrophy Type 1.”  C. Heatwole, N. Johnson, J. Dekdebrun, N. Dilek, K. Eichinger, J. Hilbert, E. Luebbe, W. Martens, M. McDermott, C. Thornton, R. Moxley.  Muscle and Nerve.  September 2016.  V. 54.  Number S1.
 
“PRISM-SMA: Patient Reported Impact of Symptoms in Adult Spinal Muscular Atrophy.”  C. Heatwole, M. Hunter, L. Luebbe, N. Dilek, C. Garland, N. Johnson.  .  Muscle and Nerve.  September 2016.  V. 54.  Number S1.
 
“Adults Living With SMA: A Patient-Centered Assessment of the Symptoms that Matter Most.”  Chad Heatwole, Michael Hunter, Liz Luebbe, Connie Garland, Nicholas Johnson.  Cure SMA Foundation.  Anaheim, CA.  6/2016.
 
“Reliability and Validity of the 6 Minute Walk Test in Individuals with Facioscapulohumeral Dystrophy” AAN annual meeting.  Vancouver, BC, Canada. 4/2016.
 
“Three Year Natural History of Motor Impairment in Myotonic Dystrophy Type 1 (DM1)” AAN annual meeting.  Vancouver, BC, Canada. 4/2016.
 
“Disease Burden and Functional Outcomes in Congenital Myotonic Dystrophy: A Cross-Sectional Study.”  AAN annual meeting.  Vancouver, BC, Canada. 4/2016.
 
“Electrical Impedance Myography Is Reliable and Correlates to Measures of Facioscapulohumeral Muscular Dystrophy Disease Severity.” AAN annual meeting.  Vancouver, BC, Canada. 4/2016.
 
“The Myotonic Dystrophy Health Index (MDHI): Correlations with Clinical Tests and Patient Function.” Chad Heatwole, Rita Bode, Nicholas Johnson, Jeanne Dekdebrun, Nuran Dilek,  Katy Eichinger, James E. Hilbert,  Eric Logigian,  Elizabeth Luebbe,  William Martens, Michael P. McDermott, Shree Pandya,  Araya Puwanant, Nan Rothrock, Charles Thornton, Barbara G. Vickrey, M.P.H., David Victorson, Richard T. Moxley.  Paris, France.  6/12/15.
 
“Results from the PRISM-2 Study: Patient Reported Impact of Symptoms in Myotonic Dystrophy Type-2.”  Chad Heatwole, Nicholas Johnson, Rita Bode, Jeanne Dekdebrun; Nuran Dilek; James E. Hilbert; Elizabeth Luebbe; William Martens; Michael P. McDermott; Christine Quinn; Nan Rothrock; Charles Thornton; Barbara G. Vickrey; David Victorson; Richard T. Moxley.  IDMC-10.  Paris, France.  6/9/15.
 
"A Cross-Sectional Evaluation of Disease Progression in Congenital Myotonic Dystrophy."  Nicholas Johnson, Russell Butterfield, Chad Heatwole, Melissa Dixon, Heather Hayes, Kiera Berggen, Evan Pusillo, Deanna DiBella, Melissa Mckay, Karen Bax, Cheryl Scholtes, Craig Campbell. IDMC-10.  Paris, France.  6/9/15"Myotonic Muscular Dystrophy Global Impact: The Wide-Ranging Cognitive and Non-Cognitive Symptoms of Myotonic Dystrophy."  The National Society of Genetic Counselors Annual Conference.  New Orleans, LA.  9/2014.
 
“The Christopher Project: A Comprehensive Survey of Patients and Families with Myotonic Dystrophy in Canada.”  Diane Bade, Cynthia Gagnon, Katharine Hagerman, Chad Heatwole, Sharon Hesterlee, Sarah Howe, Don Mackenzie, Susan Mcintyre, Maria Spiegel, Eric Wang, Jodi Wolff. IDMC-10.  Paris, France.  6/9/15. 
 
"Ambulation, Learning Difficulties, and Visual Spatial Abilities in Congenital Myotonic Dystrophy."  M Dixon, R Snyder, H Adams, J Franklin, M Hung, C Heatwole, N Johnson.    Muscle and Nerve September 2014 50:S1.
 
“The Myotonic Dystrophy Health Index (MDHI): Correlations with Clinical Tests and Patient Function.” Chad Heatwole.  IDMC-10.  Paris, France.  6/12/15.
 
“Results from the PRISM-2 Study: Patient Reported Impact of Symptoms in Myotonic Dystrophy Type-2.”  Chad Heatwole.  IDMC-10.  Paris, France.  6/9/15.
 
“Update on the MDHI: Validation of Outcome Measure for Clinical Trials.”  Chad Heatwole.  OMMYD3 Special Interest Group on Patient Reported Outcome Measures.  Paris, France.  6/8/15.
 
“The Myotonic Dystrophy Health Index (MDHI): A Disease-Specific Instrument Designed to Measure Clinically-Relevant Change in DM1 Therapeutic Trials.”  Chad Heatwole.  The Myotonic Dystrophy Type-1 Endpoint Assessment Advisory Board/ Biogen.  Paris, France.  6/7/15.
 
"Patient-Identified Disease Burden in Adult Spinal Muscular Atrophy."  Chad Heatwole.  Kansas City, Kansas.  Cure SMA Research Meeting. 6/19/15.
 
"What Matters Most: A Perspective From Adult Spinal Muscular Atrophy Patients."  Chad Heatwole. Kansas City, Kansas.  Cure SMA Family and Researchers Session. 6/17/15.
 
"Measuring Clinically Relevant Change in Adult Spinal Muscular Atrophy Clinical Trials: The development of the SMA Health Index."   Chad Heatwole.  Kansas City, Kansas.  Cure SMA Research Meeting. 6/17/15.
 
"Capturing Meaningful Data: An Update on the Facioscapulomuscular Dystrophy Health Index."  Chad Heatwole. 2nd FSHD Trial Preparedness Workshop.  Rochester, New York (National Meeting).  5/29/2015. 
 
"Odyssey of the Myotonic Dystrophies: From Discovery to Genetic Trails."   Chad Heatwole.  Neuroscience Grand Rounds.  Spectrum Health Medical Group.  Grand Rapids, Michigan.  3/4/15.
 
"Myotonic Muscular Dystrophy Global Impact: The Wide-Ranging Cognitive and Non-Cognitive Symptoms of Myotonic Dystrophy."   Chad Heatwole.  The National Society of Genetic Counselors Annual Conference.  New Orleans, LA.  9/2014.
 
"Measuring Meaningful Clinical Change During Therapeutic Trials: The Emergence of the Myotonic Dystrophy Health Index (MDHI)."   Chad Heatwole.  The Myotonic Dystrophy Foundation Annual Conference.  Washington, D.C.  9/2014.
 
"Capturing What Patients Already Know: The Development and Use of the Myotonic Dystrophy Health Index (MDHI)."  Chad Heatwole.  The Myotonic Dystrophy Foundation Annual Conference.  Washington, D.C.  9/2014.
 
"Development and Use of Patient-Reported Outcome measures in Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy."   Chad Heatwole.  Muscular Dystrophy Coordinating Committee.  Bethesda, MD.  4/2014.
 
"Paving the Road of Therapeutic Development: Qualifying Custom-Designed Outcome Measures for Muscular Dystrophy."  Chad Heatwole.  The University of Utah Neurology Grand Rounds.  1/15/14.
 
 
“A Clinical Study of Myotonic Dystrophy Type-1 (DM1) Patients’ Perception and Prioritization of Cognitive Symptoms.”  Chad Heatwole.  IDMC-9.  San Sebastian, Spain.  10/18/13.
 
 
“Clinically Relevant Outcome Measures in FSHD.”  Chad Heatwole.  Muscle Study Group Scientific Meeting.  Oxford, UK.  9/16/13.
 
 
“A Clinical Study of DM1 Patients’ Perception and Prioritization of Cognitive Symptoms.”  Chad Heatwole.  Myotonic Dystrophy Cerebral Involvement Workshop.”  Ferrer, Italy.  5/24/13.
 
 
"Next Generation of Therapeutic Trial Outcome Measures: The Development of Disease-Specific Patient-Centered Metrics."  Chad Heatwole.  The Ohio State University Neurology Grand Rounds.  5/14/13.
 
 
“Update in the Development of the FSHD Health Index.”  Chad Heatwole.  FSHD Clinical Trials Readiness Workshop.  Leiden, Netherlands.  4/8/13.
 
 
“Bringing the Patient’s View into Sight: The Creation and Validation of Disease-Specific Patient Reported Outcome Measures.”  Chad Heatwole.  CTSI Seminar Series.  Rochester, NY 2/19/13.
“The Myotonic Dystorphy Type-1 Health Index (MDHI): An Analysis of its Ability to Differnetiate Between Clinically Distinct Populations.” Chad Heatwole, Rita Bode, Jeanne Dekdebrun, Nuran Dilek, Nicholas Johnson, Elizabeth Luebbe, William Martens, Charles Thornton, Richard Moxley.  Abstract accepted for the ISPOR meeting in Berlin, Germany.  11/12.
 
“The Myotonic Dystrophy Type-1 Health Index (MDHI): A Reliable Outcome Measure for Clinical Trials and Patient Monitoring.” Chad Heatwole, Rita Bode, Jeanne Dekdebrun, Nuran Dilek, Nicholas Johnson, Elizabeth Luebbe, William Martens, Charles Thornton, Richard Moxley.  Platform presentation scheduled for the upcoming ISOQOL meeting in Budapest, Hungary.  10/12.
 
“Results from a National Cross-Sectional Study of Disease-Burden in Facioscapulohumeral Muscular Dystrophy.”  Chad Heatwole, Rita Bode, William Martens, Michael McDermott, Richard Moxley, Christine Quinn, Nan Rothrock, Rabi Tawil, Barbara Vickrey, David Victorson, Nicholas Johnson.  Platform presentation the 2012 AAN meeting in New Orleans.
 
“Identifying High Impact Symptoms and Issues in Congenital and Juvenile Myotonic Dystrophy.” Nicholas Johnson, Elizabeth Luebbe, Eileen Eastwood, Nancy Chin, Richard Moxley, Chad Heatwole. (P05.186) Neurology April 22, 2012 78:P05.186.
 
“Disease Burden in DM1: Results from a 278 Patient Cross Sectional Study.” Chad Heatwole, Rita Bode, Nicholas Johnson, Christine Quinn, William Martens, Michael McDermott, Nan Rothrock, Charles Thornton, Barbara Vickrey, David Victorson, Richard Moxley. 2011 8th International Myotonic Dystrophy Consortium Meeting.
 
“What Patients Tell Us: Results from a National Cross-Sectional Study of 328 FSHD Patients.” Chad Heatwole.  2011 FSHD International Research Consortium Meeting. Boston  FSHD.
 
“DM1 Quality-of-Life: Lessons Learned From 278 DM1 Patients.” Chad Heatwole. Myotonic Dystrophy Patient Day.  Rochester, NY 9/11/11.
 
“Defining Health Related Quality of Life in Congenital and Juvenile Myotonic Dystrophy: The First Step in the Development of a Disease-Specific Instrument.”  Nicholas Johnson, Elizabeth Luebbe, Eileen Eastwood, Nancy Chin, Richard Moxley, Chad Heatwole.  2011 8th International Myotonic Dystrophy Consortium Meeting.
 
“Update on the FSHD-Specific Quality-of-Life Outcome Measure: Identifying What is Most important to FSHD Patients.” Chad Heatwole 9/10 at the FSHD International Research Consortium, Boston, MA.
 
“Myotonic-Dystrophy Type-1: Patient Validation Study of the Highest-Impact Symptoms and Issues.” Chad Heatwole, Rita Bode, Nicholas Johnson, Christine Quinn, William Martens, Richard Moxley, Barbara Vickrey, David Victorson.  4/11 at the 63rd AAN. Citation: Neurology, Volume 76, supplement 4, P06.276.
 
“Myotonic Dystrophy Type-2: Patient-Reported Highest-Impact Symptoms and Issues.” Chad Heatwole, Rita Bode, Nicholas Johnson, Christine Quinn, William Martens, Richard Moxley, Barbara Vickrey, David Victorson.  4/11 at the 63rd AAN. Citation: Neurology, Volume 76, supplement 4, P06.275.
 
“Laboratory Abnormalities in Patients with Myotonic Dystrophy Type-2.” Nicholas Johnson, Bradley Goldberg, William Martens, Richard Moxley, Chad Heatwole.  4/11 at the 63rd AAN. Citation: Neurology, Volume 76, supplement 4, P06.271.
 
“Patient Identification of the Highest-Impact Symptoms and Issues in Facioscapulohumeral Muscular Dystrophy (FSHD).” Nicholas Johnson, Nancy Chin, Robert Holloway, Rabi Tawil, Richard Moxley, Christine Quinn, Barbara Vickrey, Chad Heatwole.  Platform presentation at the 62nd AAN. Citation: Neurology, Volume 74, supplement 2, S06.006.
 
“Update on the Myotonic Dystrophy-Specific Patient Reported Outcome Measure.” Chad Heatwole.  10/10 at the Wellstone Research Meeting, Philadelphia, PA.
 
“FSHD-Specific Patient Reported Outcome Measures.” Chad Heatwole. 1/10 at the 171st ENMC International Workshop on Standard of Care and the Management of FSHD Patients in Naarden, Netherlands.
 
“A First Step in the Development of a Disease-Specific Instrument.”  Chad Heatwole, Nancy Chin, James Hilbert, Robert Holloway, Nicholas Johnson, Shree Pandya, Richard Moxley, Christine Quinn, Charles Thornton, Barbara Vickrey, David Victorson.  10/9 at the ISPOR 12 Annual European Congress in Paris, France.
 
“High Impact Symptoms in Myotonic Dystrophy Type-1 (DM1): A Qualitative Study.”  Chad Heatwole, Robert Holloway, Nicholas Johnson, Shree Pandya, Richard Moxley, Christine Quinn, Charles Thornton, Barbara Vickrey.  9/09 at the IDMC-7 in Wurzburg, Germany.
 
“The use of a brief neuropsychological testing battery in a treatment trial for myotonic dystrophy type 1 (DM1) patients.” Alexis Smirnow, James Hilbert, Chad Heatwole, Peter Como Rochester, Richard T. Moxley, III.  4/08 at the American Academy of Neurology Meeting in Chicago, IL.