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CMT Centers Of Excellence
 

CMT Centers Of Excellence

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Here is all the information about the CMTA\'s Centers of Excellence around the country. Please look for the closest center near you, where you will find a variety of CMT specialists!

Here is all the information about the CMTA\'s Centers of Excellence around the country. Please look for the closest center near you, where you will find a variety of CMT specialists!

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    CMT Centers Of Excellence CMT Centers Of Excellence Document Transcript

    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Name Johns Hopkins CMT Clinic Adult or Pediatric? Both adult and pediatric Street Address Office: Johns Hopkins School of Medicine John G. Rangos Sr. Building, Neurology 248 855 N. Wolfe Street Baltimore, MD 21205 Clinic: Johns Hopkins Outpatient Center 601 North Caroline Street Baltimore, MD 21287-0006 Phone Number 410-955-2227 Web Address http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/cmt/ CMT Clinic Hours of Mondays 8-12, but CMT patients can also be seen in other times in regular Operation Peripheral Nerve Clinics Paying or Non-Paying Paying Clinic? Recommended Length of 2 hours Visit? IRB Approval Status IRB approved Neurologist Name(s) Ahmet Hoke MD, PhD (Director) David Cornblath MD Thomas Crawford MD (Pediatric neurologist) Thomas Lloyd MD, PhD Charlotte Sumner MD Pediatrician Name(s) Physical Therapist Dave Marriott (Physical Therapist) Name(s) Susan Schiaffino (Occupational Therapist) Physiatrist Name(s) Orthotist Name(s) Hal Thompson Genetic Counselor Lori Erby Name(s) CMT Clinic Coordinator Denise Tawney
    • MDA Health Coordinator Kathleen Kennedy (MDA Clinic Coordinator) Name MDA Rep: Laurel Gaffney (Adult) and Rachel Lewkowicz (Pediatric) MDA Phone Number Brief Description of Clinical Services Offered: The JHU CMT Clinic provides comprehensive clinical care and disease education from initial diagnosis to advanced disease. Our team provides sensitive and caring support for patients and their families. The therapeutic goal is to maximize a patient’s health, functioning, and ability using available therapy, equipment, exercise, and nutrition. Clinical research participation is offered to all appropriate and eligible CMT clinic patients. Services include: Expert evaluation by a neuromuscular specialist with emphasis on peripheral neuropathies including CMT On site: physical therapist, occupational therapist, orthotist, genetics counselor, EMG and nerve conduction studies Brief Background of the Clinic and Clinical Director: The Neuromuscular Division at Johns Hopkins has been a regional and national referral center for patients with peripheral neuropathies for many years. Although in the past CMT patients were seen in the Peripheral Nerve Clinics, JHU CMT Center was established in May 2009 to provide a multi-disciplinary coordinated care for patients with CMT. The CMT clinic is staffed by 4 adult and 1 pediatric neuromuscular specialists.
    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Name Wayne State University Adult or Pediatric? Adult and Pediatric Street Address University Health Center, 4201 St Antoine, 8B, Detroit MI 48201 Phone Number 313-577-1689 (Lisa Rowe) Web Address http://neurology.med.wayne.edu/neurogenetics/about_clinic.php CMT Clinic Hours of Operation Thursdays all day Paying or Non-Paying Clinic? All patients with CMT Recommended Length of Visit? Full day IRB Approval Status Approved Neurologist Name(s) Michael Shy, Gyula Acsadi, Sindhu Ramchandren, Agnes Acsadi, Richard Lewis Pediatrician Name(s) Rosemary Shy, Gyula Acsadi (Pediatric neurology) Physical Therapist Name(s) Polly Swingle Physiatrist Name(s) Steven Hinderer Orthopedic Surgeon (s) Robert Meehan Orthotist Name(s) Present on site Genetic Counselor Name(s) Carly Siskind, Shawna Feely, Lindsey Miller MDA Health Coordinator Name Julie Campbell MDA Phone Number 734-416-7076
    • Brief Description of Clinical Services Offered: This is a multidisciplinary clinic devoted exclusively to care for patients with inherited neuropathies and to perform clinical research that promotes the understanding and treatment for these disorders. Patients spend a full day receiving clinical evaluations, genetic counseling, PT/OT advise, orthotic/bracing advice and in certain cases evaluation by orthopedic surgery. Brief Background of the Clinic and Clinical Director: The clinic has been in existence since 1996 and currently cares for over 1000 patients with various forms of CMT. Multiple clinical research advances have occurred as a result of the clinic including the CMT Neuropathy Score (CMTNS), a measure of impairment that is used internationally to measure clinical impairment in CMT. The clinic is supported in part by research grants from the NIH, MDA and CMTA. Dr. Michael Shy is Director of the Clinic. Dr. Shy Chairs the Medical Advisory Board of the CMTA, is a member of the Medical Advisory Committee (MAC) of the MDA, is Primary Investigator (PI) of the North American CMT Network and is PI of the NIH supported Rare Disease Clinical Research Center (RDCRC) for Inherited Neuropathies.
    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Name University of Rochester Medical Center Adult or Pediatric? Adults and children 3 years and older Street Address 601 Elmwood Avenue, Rochester, NY, 14642 Phone Number 585 275 2559 Web Address http://www.urmc.rochester.edu/neurology/patient- care/neuromuscularctr.cfm CMT Clinic Hours of Operation Thursday 8am -12 pm; Patients participating in research studies may be seen at other times Paying or Non-Paying Clinic? Accept all forms of insurance Recommended Length of Visit? New patient visit: 1.5-2.5 hours; Follow-up visit 30-60 minutes IRB Approval Status The CMT clinic has IRB approval for the CMT Association/MDA North American CMT Database and the NIH sponsored Inherited Neuropathy Consortium Rare Disease Clinical Research Center Studies. University of Rochester is also the Coordinating Center and a site for the MDA/CMT Association sponsored Ascorbic Acid Trial in CMT1A. Dr. Herrmann has IRB approval for an Ancillary study of in vivo Confocal Microscopy of Meissner Corpuscles in the skin as a measure of CMT neuropathy Neurologist Name(s) David N. Herrmann, MD; Eric L. Logigian, MD; Michael Stanton, MD Pediatrician Name(s) Dr. Herrmann does evaluations of children with CMT over age 3 years. For younger children, referrals are made to Pediatric Neurology Physical Therapist Name(s) Katy Eichinger Physiatrist Name(s) Referrals can be made to Dr. Poduri, Chair of Physical Medicine and Rehabilitation Department, University of Rochester Orthotist Name(s) Utilize a variety of local orthotists depending on patient’s needs Genetic Counselor Name(s) Referrals are made to Erin Lagoe, M.S. MDA Health Coordinator Name
    • Brief Description of Clinical Services Offered: The CMT clinic at University of Rochester Medical Center operates within the Neuromuscular Disease Center at the University of Rochester. Individuals with CMT or suspected CMT are seen in new patient evaluations by Dr. Eric Logigian on Monday am, or Dr. Herrmann and Stanton on Thursday am. Katy Eichinger, a physical therapist with a clinical and research interest in CMT, does balance, gait, orthotic and other functional evaluations in the clinic on Thursday mornings, and makes recommendations to the Physicians in the CMT clinic and patients regarding appropriate physical therapy, rehabilitation and orthotic interventions. Patients with established CMT are seen in clinical follow-up on Thursday mornings. Dr. Herrmann, Stanton and Logigian are assisted by 2 nurse practitioners, Debra Guntrum and Cindy Gibson who have experience in the care of patients with neuromuscular disorders. The CMT clinic has access to ancillary services including the University of Rochester EMG laboratory directed by Dr Eric Logigian, and nerve and skin biopsy diagnostic services (Dr. Herrmann). The University of Rochester has Occupational Therapy and Orthotics Departments, and has pediatric and adult orthopedic surgeons who specialize in foot and ankle disorders, as well as ENT and pulmonary specialists experienced in the respiratory and vocal cord effects of CMT. Orthopedic and neurosurgeons with expertise in spine and nerve root disorders are available. Brief Background of the Clinic and Clinical Director: Dr. David Herrmann is an Associate Professor of Neurology and Pathology at the University of Rochester Medical Center. He is Director of the Peripheral neuropathy and CMT clinics and Director of the Skin biopsy Laboratory at the University for the study of sensory neuropathies. Dr. Herrmann obtained his medical degree at the University of the Wiwatersrand, Johannesburg, South Africa. He completed an Internal Medicine Residency in Cleveland Ohio, and did his Neurology Residency training at the University of Michigan, in Ann Arbor. He undertook a peripheral neuropathy research fellowship at Johns Hopkins University and specialized in neuromuscular disorders and electromyography at the University of Michigan. Dr. Herrmann has been a faculty member at the University of Rochester for 11 years, and established the Peripheral Neuropathy and CMT clinics at the University. His main clinical interest is in the care of patients with peripheral neuropathies, with an emphasis on CMT and diabetic neuropathies. His research interest focuses on improving methods for assessment and monitoring of peripheral neuropathies including CMT, and in development of therapy for CMT.
    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Name University of Pennsylvania Adult or Pediatric? Adult Street Address Second Floor, Ravdin Building University of Pennsylvania Medical Center Philadelphia, PA 19014 Phone Number 215-662-3606 (appointments) Web Address http://www.pennmedicine.org/neuro/services/neuromusc.html CMT Clinic Hours of Operation Fridays 1-5; appointments can be made at other times by special arrangement Paying or Non-Paying Clinic? Paying Recommended Length of Visit? 2 hours IRB Approval Status IRB approved Neurologist Name Steven Scherer, M.D., Ph.D. Neurologist who evaluate Shawn J. Bird, M.D. patients and perform clinical Mark J. Brown, M.D. neurophysiology (EMG) Richard Finkel, M.D. Toby Ferguson, M.D., Ph.D. Steven Scherer, M.D., Ph.D. Pediatrician Name(s) Physical Therapist Name(s) Physiatrist Name(s) Orthotist Name(s) Scott McCulloch Genetic Counselor Name(s) Dana Clay Othopedist Name(s) Helen Horstmann, M.D. MDA Health Coordinator Name Megan Craig
    • Brief Description of Clinical Services Offered: Dr. Steven Scherer provides a complete diagnostic evaluation, patient education, and helps arrange for the appropriate ancillary services, including electrophysiology (EMG), genetic testing, physical therapy, occupational therapy, orthopedics, and genetics counseling. Brief Background of the Clinic and Clinical Director: The Department of Neurology at the University of Pennsylvania has maintained expertise in peripheral neuropathy, including CMT, since the 1970s. Some of the genetic causes of CMT were discovered at the University of Pennsylvania. The MDA has long supported the neuromuscular clinic, and along with the CMTA, now supports the CMT Clinical Centers of Excellence. In addition to the clinical services noted above, appropriate patients will be given the opportunity to participate in research. Dr. Steven Scherer is a specialist in peripheral neuropathy, and has particular expertise in CMT. He has personally seen more than 200 patients who have various forms of CMT, and is involved in ongoing research project to find the causes and the treatments for these diseases.
    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Name The Children's Hospital of Philadelphia Neuromuscular Clinic University of Pennsylvania School of Medicine Philadelphia, PA Adult or Pediatric? Pediatric Street Address 34th Street and Civic Center Blvd Philadelphia, PA 19104 Phone Number 215-590-1719 (Neurology) 267-426-2320 (Neuromuscular clinic appointments) Web Address www.chop.edu CMT Clinic Hours of Operation Wednesdays, Thursdays and Fridays EMGs on Tuesdays Paying or Non-Paying Clinic? All patients are seen for an initial consultation without regard to insurance coverage. The MDA provides some support to our clinic to cover unreimbursed patient care costs. Our social worker assists those without insurance to explore other coverage options Recommended Length of Visit? 2 hours: neurology, OT, PT, genetics, social worker IRB Approval Status Pending; anticipated approval 2/2010 Neurologist Name(s) Richard S. Finkel, Sabrina Yum, Carsten G. Bonnemann, Gihan Tennekoon Pediatrician Name(s) Physical Therapist Name(s) PT: Allan Glanzman, Jean Flickinger, Megan Schaefer OT: Tim Estilow, Michelle Hsia Physiatrist Name(s) Chong-Tae Kim, Heakyung Kim, Thomas Drake Orthotist Name(s) Nopco brace shop at CHOP, Lewall’s Genetic Counselor Name(s) Livija Medne MDA Health Coordinator Name Page E. McKonly. Healthcare Services Coordinator Delaware Valley MDA 600 Reed Road, Suite 104 Broomall, PA 19008 MDA Phone Number Phone: 610-325-5758 Fax: 610-325-0506 pmckonly@mdausa.org 3341.office@mdausa.org
    • Brief Description of Clinical Services Offered: The Neuromuscular Clinic at The Children's Hospital of Philadelphia provides comprehensive diagnostic testing, genetic counseling, multidisciplinary management and participation in clinical trials. An emphasis is placed on maximizing each child’s function, promoting independence and inclusion in age- related activities. Depending upon the child’s needs, occupational and physical therapist, nutrition consultation and social work assessment are provided at each clinic visit. Brief Background of the Clinic and Clinical Director: The Children's Hospital of Philadelphia is the oldest pediatric facility in the US. The Neuromuscular Program at CHOP works in conjunction with the adult counterpart at The Hospital of the University of Pennsylvania. Neuropathology, fellowship training and clinical conferences are coordinated between the two sites. Each has a clinical and a research component. The pediatric clinic at CHOP provides clinical care to the Philadelphia region, nationally and internationally. A multidisciplinary clinic format is utilized, where several providers evaluate the child at each visit. Richard S. Finkel, MD has been the director of the clinic since 1999. He is a pediatric neurologist with a focus on the diagnosis and treatment of children with neuromuscular disorders. He participates in several clinical trials and collaborates in numerous clinical trial groups in the US and Europe.
    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Children's Medical Center Dallas, Division of Pediatric Neurology Name Adult or Pediatric? Pediatric Street Address 2350 Stemmons Fwy, Suite 5074, Dallas, TX 75207 Phone Number 214-456-5220 Web Address http://www.childrens.com/Specialties/template.cfm?groupid=126&pageid=647 CMT Clinic Hours of M-Th 7:30 – 5:00 Operation Paying or Non- Both Paying Clinic? Recommended 2 hours Length of Visit? IRB Approval Status Approved Neurologist Name(s) Susan T. Iannaccone, MD, FAAN Cristian Ionita, MD (neuromuscular fellow) Pediatrician Name(s) None Physical Therapist Leslie Nelson, MPT Name(s) Physiatrist Name(s) Frank McDonald, MD Orthotist Name(s) Greg Small and Franck Vautrin Genetic Counselor Gail Brookshire Name(s) MDA Health Joe Sanchez Coordinator Name MDA Phone Number 972-480-0016
    • Brief Description of Clinical Services Offered: Full evaluation and treatment of CMT children by Dr. Iannaccone, a neuromuscular fellow or physician’s assistant. Treatment plan is enhanced by a care coordinator, clinic nurse, dietitian, physical therapist, MDA representative and two research coordinators. Brief Background of the Clinic and Clinical Director: Neuromuscular Clinic: The inception of Dr. Iannaccone’s Dallas-based neuromuscular clinic took place at Texas Scottish Rite Hospital for Children in Dallas, TX, where she was the Director of Neuromuscular Disease and Neurorehabilitation from 1990 - 2005. In 2005, Dr. Iannaccone became the Jimmy Elizabeth Westcott Distinguished Chair of Pediatric Neurology at UT Southwestern Medical Center and moved her clinic to Children's Medical Center Dallas. Currently, Dr. Iannaccone’s database includes approximately 350 CMT children. She designates one clinic day per month to her CMT clinic at Scottish Rite and sees several new CMT patients per month at Children's Medical Center Dallas. Dr. Iannaccone’s neuromuscular team is comprised of a neuromuscular fellow, physician’s assistant, care coordinator, clinic nurse, dietitian, physical therapist, MDA representative and two research coordinators. Susan T Iannaccone, MD, FAAN: State University of New York, Syracuse, New York MD 1969 MEDICINE LeMoyne College, Syracuse, New York BS 1962-65 BIOLOGY Strong Memorial Hospital, University of Rochester, 1972-75 Neurology Rochester, New York St. Louis Children's Hospital, Washington University, 1971-1972 Pediatrics St. Louis, Missouri State University Hospital, Upstate Medical Center, 1969-1971 Pediatrics Syracuse, New York 2005-Present Jimmy Elizabeth Westcott Distinguished Chair of Pediatric Neurology 2004-Present Professor of Pediatrics, University of Texas Southwestern Medical Center at Dallas, Dallas, Texas
    • 1995–Present Professor of Neurology, University of Texas Southwestern Medical Center at Dallas, Dallas, Texas 2008 Texas 2008 Super Doctors (Texas Monthly) 1999 Program Director, Annual Meeting of the Charcot-Marie-Tooth Association, Dallas, Texas ARTICLES, PUBLICATIONS, AND PRESENTATIONS OF CMT: Sparagana S, Iannaccone ST, Delgado M, Brumback RA: Charcot-Marie-Tooth disease versus muscular dystrophy. J Child Neurol 9(2):202, 1994. Chudnow R, Iannaccone ST, Barohn RJ: Chronic inflammatory demyelinating polyneuropathy versus Charcot-Marie-Tooth disease. J Child Neurol 10(2):160, 1995. Iannaccone ST, Rosenberg R, Greenlee RG, Carman D, Birch J, Nance J: What is Charcot-Marie-Tooth Disease? Presented at the Charcot-Marie-Tooth Association Patient/Family Conference, Texas Scottish Rite Hospital for Children, Dallas, Texas, October, 1991. Iannaccone ST: History of Charcot-Marie-Tooth disease and clinics. Presented at the Annual Meeting of the Charcot-Marie-Tooth Association, Dallas, May 15, 1999. Beeravolu L and Iannaccone ST: CMT2A2 in children. J Clin Neuromusc Dis 9 (March): 10-11, 2008. Beeravolu LR and Iannaccone ST, Sparagana SP: Charcot-Marie-Tooth Neuropathy (UCMT) Type 2A2 in Children: A Retrospective Case Series. Neurology 72:A295, 2009. Ionita C and Iannaccone ST: “A rare cause of floppy infant syndrome,” Carrell-Krusen Symposium, Dallas, TX; February 25, 2010. Almidani and Iannaccone ST: “Six year old boy with neuropathy,” Carrell-Krusen Symposium, Dallas, TX; February 25, 2010.
    • Charcot Marie Tooth Association Clinical Center of Excellence Fact Sheet Clinic/Institution Name University of Washington Adult or Pediatric? Adult Street Address 1959 Pacific St; Seattle WA; 98195 Phone Number 206-598-4030 Web Address http://depts.washington.edu/neurogen/ CMT Clinic Hours of Operation Tuesdays and first Wednesday afternoon each month Paying or Non-Paying Clinic? Paying Recommended Length of Visit? 2 hours IRB Approval Status Approved Neurologist Name(s) Thomas D. Bird Pediatrician Name(s) None Physical Therapist Name(s) Several Physiatrist Name(s) Gregory Carter Orthotist Name(s) NA Genetic Counselor Name(s) Corrie Smith MDA Health Coordinator Name Sara Kleiver MDA Phone Number 206-283-2106 Brief Description of Clinical Services Offered: Diagnosis, genetics testing, genetic counseling, physical therapy, orthotics Brief Background of the Clinic and Clinical Director: Dr. Bird has been involved with CMT diagnosis and research for more than 30 years. Our CMT clinic is embedded within our MDA and Neurogenetics clinics at the University of Washington.