Biography
Chad Heatwole, MD, MS-CI is a Professor of Neurology and the Associate Director of the Center for Health and Technology at the University of Rochester. He has an engineering degree from Virginia Tech, a medical degree from the Medical College of Virginia, a master's degree in clinical investigation, and has completed a University of Rochester neurology residency, electrophysiology fellowship, and NIH-funded neuromuscular experimental therapeutics fellowship. He has had continuous grant funding over the last 15 years and has served as the Principal Investigator on over 25 research grants including awards from the National Institutes of Health (NIH), Muscular Dystrophy Foundation, New York State, and numerous research foundations. Dr. Heatwole's research has led to the development of an internationally recognized network dedicated to improving the quality-of-life of neuromuscular patients through patient-centered clinical research and therapeutic development. His professional interests include providing optimal care to patients with neuromuscular disorders, conducting electrodiagnostic studies, training medical personnel, evaluating novel experimental therapeutics for neurological diseases though clinical trials, and developing an improved infrastructure to utilize disease-specific, patient-relevant endpoint measures for use in clinical trials and patient monitoring.
Professional Background
Dr. Heatwole is board certified in both neurology and neuromuscular disease with sub-specialty fellowship training in neuromuscular medicine, electrophysiology, and experimental therapeutic development. Dr. Heatwole is committed to: 1) providing optimal care to patients with neurological and neuromuscular disease; 2) teaching students, residents, and fellows; and, 3) training faculty in therapeutics and outcome measure development research. His main clinical focus is in the management and diagnosis of patients with neuromuscular disease. Working in a well-established neuromuscular disease clinic at URMC, Dr. Heatwole’s "myotonia clinic" forms a key resource for international patient recruitment and therapeutic care at the University of Rochester. Through this clinic, he provides clinical care and research opportunities to children and adults with dystrophic and non-dystrophic myotonic disorders as well as a diverse group of neuromuscular patients with both rare and common disorders.
Research
Dr. Heatwole’s research laboratory is internationally known for the development, validation, and analysis of highly sensitive patient relevant outcome measures for use in drug labeling trials. Dr. Heatwole has planned and implemented numerous investigator initiated clinical studies and has developed over 100 disease-specific instruments in 10 different languages. These instruments are extensively used globally to measure therapeutic gain during clinical trials and have been used in academic initiated trials, pharmaceutic sponsored trials, government initiated trials, and as clinical markers of disease burden. Through his joint role as associate director and director/founder of the Outcomes Division at the Center for Health and Technology, Dr. Heatwole guides an international multi-faceted research and operations center dedicated to harnessing state-of-the-art technologies and advancing research and clinical care through improved clinical trial infrastructure. Diseases that he is currently focusing on include:
Myotonic dystrophy type-1 (DM1)
Myotonic dystrophy type-2 (DM2)
Congenital myotonic dystrophy (CMD)
Juvenile myotonic dystrophy (JMD)
Charcot-Marie Tooth 1a (CMT1a)
Inclusion body myositis (IBM)
Facioscapulohumeral muscular dystrophy (FSHD)
Spinal muscular atrophy (SMA)
Huntington’s disease (HD)
Amyotrophic lateral sclerosis (ALS)
Friedreich’s ataxia (FA)
Duchenne muscular dystrophy (DMD)
Cerebral cavernous malformation (CCM)
Crohn’s disease (CD)
Lung cancer (LC)
Parkinson’s Disease (PD)
Alzheimer’s Disease (AD)
Limb Girdle Muscular Dystrophy (LGMD)
Adrenomyeloneuropathy (AMN)
Dr. Heatwole is also committed to the study and development of novel experimental therapeutics. He has conducted numerous clinical studies including ones involving mexiletine, recombinant human insulin-like growth factor, and antisense oligonucleotides. As PI of a NIH U01 longitudinal study of FSHD patients, Dr. Heatwole has evaluated and developed natural history data and novel outcome measures for this population. Currently, Dr. Heatwole is primary investigator of a NIH-funded, investigator-initiated, clinical trial studying two promising endocrine therapies for FSHD patients.
Dr. Heatwole’s other research initiatives seek to better understanding the baseline abnormalities associated with the neuromuscular disease, understand the association between biomarkers and disease severity, and understand how muscular dystrophies progress over time. This work has led to the identification of defining laboratory characteristics in muscular dystrophies, data on the disease progression in FSHD and myotonic dystrophy, biomarker discovery, evidence-based guidelines, and a novel differentiating clinical sign for myotonic dystrophy type-1 and type-2.
Awards
2016
University of Rochester Master Mentors Program.
2015
Myotonic Dystrophy Foundation (MDF) Travel Award to Facilitate Myotonic Dystrophy Health Index (MDHI) Translational Research
2013
Chairman of Ethical-Legal-Social Issues in Myotonic Dystrophy Session. IDMC-9
Location: . San Sebastian Spain
2013
Chairman of DM1 Clinical Trials & Biomarkers Session. IDMC-
Location: San Sebastian Spain.
2013
Chairman of Patient Reported Outcome Measures for Myotonic Dystrophy; OMMYD Meeting
Location: San Sebastian Spain
2012 - 2014
Myotonic Dystrophy Foundation Research Grant (Supervising Mentor for Dr. Nick Johnson)
Sponsor: Myotonic Dystrophy Foundation
2011 - 2015
FDA Research Grant: Mexiletine Treatment in Myotonic Dystrophy Type-1 (Co-Investigator)
Sponsor: FDA
2010 - 2012
NIH Clinical Research Loan REpayment Grant REnewal Recipient
Sponsor: NIH
2010
Clinical Research Loan Repayment Grant Renewal Recipient
Sponsor: NIH
2008 - 2013
NIH K23 Career Development Grant Award Winner (NIAMS)
Sponsor: NIH
2008 - 2011
2008 Muscular Dystrophy Association Translational Research Infrastructure Grant Award Winner (Funding from 2008-2011)
2008 - 2010
NIH Clinical Research Loan Repayment Grant Recipient
Sponsor: NIH
2008 - 2010
ECRIP (Empire Clinical Research Investigator Program) Grant Award Winner (
2008
Paul Wellstone Muscular Dystrophy Cooperative Research Center Umbrella Center
Sponsor: MDCRC
2008
Clinical Research Loan Repayment Grant Renewal Recipient
Sponsor: NIH
2007
NIH Clinical and Translational Science Institute K12 Award Recipient
Sponsor: NIH
2006 - 2008
NIH Clinical Research Loan Repayment Grant Recipient
Sponsor: NIH
2006 - 2007
NIH Experimental Therapeutics Grant Recipient for
Sponsor: NIH
2005 - Present
Ad Hoc editor for Neurology
2004
American Neurology Association Scholarship Winner, Toronto 2004
Sponsor: American Neurology Association
2003
UCB Pharma, Inc. Neurology Resident Scholar. 2003
2003
UCB Pharma, Inc. Neurology Resident Scholar
1999
Student Elective Term Scholarship Winner (MMA) 1999
1998 - 1999
S.O.M. State Discretionary Scholarship Winner 1998, 1999
1998 - 1999
S.O.M. State Discretionary Scholarship Winner
1997
Awarded Virginia Tech's Best ESM 1997 Ind. Senior Project Presentation
Recognized by 2019 medical student survey as one of the University of Rochester's Inspiring Faculty Members
Sponsor: 2019 University of Rochester Medical Students
Location: University of Rochester
Student Elective Term Scholarship Winner (MMA) 1999
Awarded Virginia Tech's Best ESM Ind. Senior Project Presentation 1997
Sponsor: Virginia Tech
Tau Beta Pi National Engineering Honor Society
Strong Star Award for Exceptional Service and Displaying Compassion and Respect to Patients, Families and Co-workers
Patient and Family Centered Care Award
Sponsor: University of Rochester
Board of Supervisors Academic Excellence Award
Dean's List (General Engineering, and in ESM)
American Neurology Association Scholarship Winner 2004
Location: Toronto
Patient and Family-Centered Care award (2011)
Location: The University of Rochester
Board of Supervisors Academic Excellence Award
Dean's List (General Engineering, and in ESM)
Tau Beta Pi National Engineering Honor Society
Muscle and Nerve award for authorship of one of the most read/viewed manuscripts in 2018-2019
Sponsor: Muscle and Nerve
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Patents
Patent Title: The Spinal Muscular Atrophy Health Index (SMA-HI)
Patent #: TXu 2-244-1782
Issue Date: Jan 27, 2021
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The Myotonic Dystrophy Type-2 Health Index (MD2HI)
Patent #: TXu 2-124-841
Issue Date: Nov 19, 2018
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The Myotonic Dystrophy Health Index (MDHI)
Patent #: TXu 1-859-815
Issue Date: Mar 26, 2013
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The Inclusion Body Myositis Health Index (IBM-HI)
Patent #: TXu 2-259-583
Issue Date: May 11, 2021
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The Huntington Disease Health Index (HD-HI)
Patent #: TXu 2-124-913
Issue Date: Nov 19, 2018
Country: United States
Invented By:
Earl Ray Dorsey, Chad R Heatwole
Patent Title: The Friedreich's Ataxia Health Index (FA-HI)
Patent #: TXu002242119
Issue Date: Mar 05, 2021
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The FSHD-Health Index
Patent #: TXu 1-867-274
Issue Date: May 08, 2013
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The Duchenne Muscular Dystrophy Health Index (DMD-HI)
Patent #: TXun2-260-028
Issue Date: May 12, 2021
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The Duchenne Muscular Dystrophy Caregiver Reported Health Index (DMDCR-HI)
Patent #: TXun2-259795
Issue Date: May 12, 2021
Country: United States
Invented By:
Chad R Heatwole
Patent Title: The CMT-Health Index (CMT-HI)
Patent #: TXu 2-181-521
Issue Date: Apr 07, 2016
Country: United States
Invented By:
Chad R Heatwole, David N Herrmann, Nicholas E Johnson
Patent Title: Facioscapulohumeral Dystrophy Composite Outcome Measure (FSHD-COM)
Patent #: TXu 2-056-221
Issue Date: Aug 17, 2017
Country: United States
Invented By:
Katy J Eichinger, Chad R Heatwole, Jeffery Statland, Al-Rabi N Tawil
Patent Title: Crohn’s Disease Health Index (CDHI)
Patent #: TXu 2-275-092
Issue Date: Aug 11, 2021
Country: United States
Invented By:
Chad R Heatwole
Patent Title: Congenital and Childhood Myotonic Dystrophy Research Survey: Instrument for Children Ages 5 to 7
Patent #: TXu 1-933-072
Issue Date: Dec 08, 2014
Country: United States
Invented By:
Chad R Heatwole, Joanna Heatwole, Nicholas E Johnson
Patent Title: Congenital and Childhood Myotonic Dystrophy Health Index: Parent Proxy Instrument
Patent #: TXu 1-939-207
Issue Date: Sep 09, 2014
Country: United States
Invented By:
Chad R Heatwole, Nicholas E Johnson
Patent Title: Congenital and Childhood Myotonic Dystrophy Health Index: Instrument for Children Ages 8 to 11
Patent #: TXu 1-920-539
Issue Date: Sep 09, 2014
Country: United States
Invented By:
Chad R Heatwole, Nicholas E Johnson
Patent Title: Congenital and Childhood Myotonic Dystrophy Health Index: Instrument for Children Ages 12 to 17
Patent #: TXu 1-920-540
Issue Date: Sep 09, 2014
Country: United States
Invented By:
Chad R Heatwole, Nicholas E Johnson
Patent Title: Congenital and Childhood Myotonic Dystrophy Health Index Clinician Assessment
Patent #: TXu 2-209-015
Issue Date: Jun 29, 2020
Country: United States
Invented By:
Chad R Heatwole, Nicholas E Johnson
Patent Title: Amyotrophic Lateral Sclerosis Health Index (ALS-HI)
Patent #: TXu 2-227-966
Issue Date: Nov 09, 2020
Country: United States
Invented By:
Chad R Heatwole
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Publications
Journal Articles
3/12/2021
Zizzi CE, Luebbe E, Mongiovi P, Hunter M, Dilek N, Garland C, Ciafaloni E, Zaidman CM, Kissel JT, McDermott MP, Johnson N, Sansone V, Heatwole CR. "The Spinal Muscular Atrophy Health Index (SMA-HI): A Novel Outcome for Measuring How a Patient Feels and Functions." Muscle & nerve.. 2021 Mar 12; Epub 2021 Mar 12.
2/9/2021
Sansone VA, Pirola A, Lizio A, Greco LC, Coratti G, Casiraghi J, Pane M, Pera MC, Italiano C, Messina S, Pozzi S, Sframeli M, D'Amico A, Bertini E, Bruno C, Mauro L, Salmin F, Stancanelli C, Pedemonte M, Albamonte E, Zizzi C, Heatwole C, Mercuri E, . "The Spinal Muscular Atrophy Health Index: Italian validation of a disease-specific outcome measure." Neuromuscular disorders : NMD.. 2021 Feb 9; Epub 2021 Feb 09.
10/12/2020
Heatwole C, Luebbe E, Rosero S, Eichinger K, Martens W, Hilbert J, Dekdebrun J, Dilek N, Zizzi C, Johnson N, Puwanant A, Tawil R, Schifitto G, Beck CA, Richeson JF, Zareba W, Thornton C, McDermott MP, Moxley R. "Mexiletine in myotonic dystrophy type-1: A randomized, double-blind, placebo-controlled trial." Neurology.. 2020 Oct 12; Epub 2020 Oct 12.
Books & Chapters
2017
Chapter Title: Channelopathies: Myotonic Disorders and Periodic Paralysis
Book Title: Swaiman's Pediatric Neurology Principles and Practice Sixth Edition
Author List: Heatwole, C; Moxley, R.
Published By: Elsevier 2017
2014
Chapter Title: Myotonic Dystrophy Health Index: Initial Evaluation of a Disease-Specific Outcome Measure
Book Title: AANEM
Author List: Heatwole, C
Published By: AANEM podcast 2014
2012
Chapter Title: Channelopathies: Myotonic Disorders and Periodic Paralysis
Book Title: Swaiman's Pediatric Principles and Practice 5th edition
Author List: Heatwole, C; Moxley, R.
Published By: Elsevier Saunders 2012
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