| General Information
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Research and Trials
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Philadelphia - ALS Association Center at the Penn Neurologic Institute
- The University of Pennsylvania and Pennsylvania Hospital
330 South 9th Street
Philadelphia, Pennsylvania 19107
- Phone: 215-829-6500
- Fax: 215-829-6606
- E-mail: lfmcclusky@pahosp.com
- Website: http://neurology.med.upenn.edu/~als/
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- Medical director:
- Leo McCluskey, M.D.
- Other specialties:
- Rehabilitation medicine, pulmonary medicine, occupational therapy, physical therapy, speech therapy, nutrition, mental health nursing, ALS nurse specialists, social work, respiratory therapy, adaptive equipment technologist, psychiatrist.
- Other disorders treated:
- The University of Pennsylvania's department of neurology at the University of Pennsylvania Hospital and Pennsylvania Hospital offers diagnostic and management services for all neuromuscular disorders including myopathies, muscular dystrophies, inherited and acquired neuropathies, motor neuron disorders, neuromuscular junction disorders (myasthenia and myasthenic syndrome).
- Other information:
- Certified by the ALS Association 6/2002
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- Research emphasis (clinical):
- Outcomes based clinical research
- Respiratory management
- Nutrition management
- Symptom management
- Quality of life
- End of life decision making
- Ethics of ALS care
- ALS CARE Data Base
- Tissue Banking at the Center for Neurodegenerative
Disease at the University of Pennsylvania
- Frontotemporal Dementia
- Clinical detection and management
Longitudinal study of cognitive function in ALS (Keith Robinson, M.D.)
- Neuropathology
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- Research emphasis (basic science):
- Motor neuron activity during synapse formation and
reinnervation (Rita Balice-Gordon, Ph.D.)
- Differential gene expression in affected and
unaffected motor neurons in ALS (Peter Crino, M.D., Ph.D.)
- Molecular functions of survival motor neuron protein
product of the SMN gene (Gideon Dreyfuss, Ph.D.)
- The Golgi apparatus in ALS (Nicholas Gonatas, M.D.)
- Disrupted axonal transport in the pathogenesis of
motor neuron degeneration (Erika Holzbaur, Ph.D.)
- Tauopathies: Genotype and Phenotype (Virginia M-Y
Lee, Ph.D.)
- Glutamate transporters in the CNS (Michael Robinson,
Ph.D.)
- Regulation of extracellular excitotoxins (Michael
Robinson, Ph.D.)
- Trafficking of a neuronal glutamate transporter,
EAAC1 (Michael Robinson, Ph.D..)
- Pathogenic mechanisms of neurofilament-induced motor
neuron degeneration (William Schlaepfer, M.D.)
- Regeneration in the spinal cord - role of
neurofilament (Michael Selzer, M.D., Ph.D.)
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- Contact person: Mary Kelley, RN, MSN, CRNP
- Nurse Coordinator
- Phone: 215-829-3053
- Fax: 215-829-6606
- E-mail: mkelley@pahosp.com
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- Record last reviewed:
- 24 Jun 2002
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MDA/ALS Center of Hope at Drexel University College of Medicine
- 219 North Broad Street
Philadelphia, PA 19107
- Phone: 215-762-5035
- Fax: 215-762-3899
- E-mail: heiman@drexel.edu
- Website: http://www.drexelmed.edu/GraduateStudies/Research
/KeyAreasofResearch/Neurosciences/AmyotrophicLateralSclerosis
/tabid/710/Default.aspx
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- Medical director:
- Terry D. Heiman-Patterson M.D.
- Co-directors:
- Gary Romano M.D.
Thomas Brannigan M.D.
Theodore Tatarian DO
Howard Natter M.D.
- Other specialties:
- Nurse co-ordinator, research co-ordinator, social
services specialist, mental health councilor, physical therapist,
occupational therapist, respiratory therapist, nutritionist, speech and
swallowing therapist.
- Other disorders treated:
- Any disorder of motor neurons including
motor neuropathies, SMA, Multifocal conduction block, hereditary spastic
paraparesis, and progressive lateral sclerosis. A separate neuromuscular
clinic is available for other neuromuscular disorders including peripheral
neuropathies, myasthenia gravis, muscular dystrophies, polymyositis or
muscle weakness.
- Other information:
- ALSA (ALS Association) Certified MCP-Hahnemann University
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- Research emphasis:
- The ALS Center of MCP-Hahnemann University is devoted not
only to the clinical care of patients with ALS but to clinical and basic research development.
- Clinical trials:
- Sanofi SR57746A-Phase III with and without Rilutek
BDNF-Phase II and III
Myotrophin -Phase III extension, expanded access
- Clinical research programs:
- Bipap (bilevel positive airway pressure) in ALS:
- The clinical research team at the Hahnemann University ALS Center has
recently received a grant to study whether Bipap can slow respiratory
decline in patients with ALS, prolong survival, and improve the quality of
life. The focus of this study is to examine the best time to begin Bipap
during the course of the disease.
- ALS Care Database:
- This program is in use at the Hahnemann Center, where we have enrolled
over 120 patients to date. The forms are done at your clinic visit and are
absolutely confidential.
- Genetic studies in ALS:
- The ALS Center of MCP Hahnemann University has begun a collaboration with
Dr. Robert J. Brown Jr. from Massachussetts General Hospital to search for
other genes in familial ALS and to look for genetic factors that may play
a role in sporadic ALS.
- Tissue Bank:
- The ALS Association has launched a one year pilot "Tissue Bank" project
at six centers including MCP-Hahnemann University. The goal of the project
is to establish a group of centers with standardized collection
procedures that will collect and store brain and spinal cord tissue from
ALS patients who donate their tissues for researchers across the country.
- Dementia in ALS:
- While dementia is generally not considered a feature of ALS there is
increasing evidence of cognitive problems in some patients with ALS.
Researchers at the clinic have recently been awarded a special grant to
develop technology applied to clinical problems. This research project is
designed to develop a relatively brief test that can reliably and validly
evaluate a broad range of cognitive functions in the patient with ALS who
has significant involvement of motor and speech processes through the use
of computer interfaces and specially designed software.
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- Basic research:
- Glutamate studies in SOD Transgenic mice (Supported by a grant from the ALS
Association); neurotrophin response in motor neurons from SOD Transgenic
Mice.
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- Contact person: Terry Paylor RN
- Phone: 215-762-5186
- Fax: 215-762-5051
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- Record last reviewed:
- 05 Jul 2006
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Hershey - The ALS Clinic at the Milton S. Hershey Medical Center
- Penn State College of Medicine
The Milton S. Hershey Medical Center
Division of Neurology, HO 37
500 University Drive, PO Box 850
Hershey, Pennsylvania 17033
- Phone: 717-531-8692
- Fax: 717-531-4694
- E-mail: zsimmons@psu.edu
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- Medical director:
- Zachary Simmons, M.D.
- Specialty:
- Neurology
- Other specialties:
- Pulmonary Medicine, gastroenterology, ALS clinical nurse specialist, mental health nurse, physical therapy, occupational therapy, speech and language pathology,
clinical nutrition, social work
- Other diseases/conditions treated at this clinic:
- We have separate neuromuscular clinics in which we are involved in the treatment of a wide
variety of other neuromuscular disorders including muscular dystrophies,
inflammatory myopathies (polymyositis, dermatomyositis, inclusion body
myositis), congenital myopathies, mitochondrial myopathies, metabolic
myopathies, myotonic dystrophy, myotonia congenita, disorders of
neuromuscular transmission (myasthenia gravis, Lambert-Eaton myasthenic
syndrome), polyneuropathies (hereditary and acquired) and other motor neuron
diseases.
- Other information:
- Our clinic is certified by the ALS Association and also
supported by the Muscular Dystrophy Association. It offers comprehensive
evaluation of patients with possible ALS, and comprehensive treatment of
patients with ALS.
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- Research emphasis:
- 1. Quality of life research, looking at patients with ALS and at their
caregivers. We have a particular interest in the spiritual issues involved
in quality of life.
2. Collaborative basic research work with James Connor, PhD and Philip
Boyer, MD, PhD, studying cells transfected with mutant SOD1 genes and
studying the possible role of iron metabolism in ALS
3. A tissue bank has been established for brain, spinal cord, and peripheral
nerve and muscle tissue of patients with ALS for research purposes.
- Clinical trials in progress:
- 1. Developing a disease-specific instrument for assessing quality of life in
patients with ALS. No drug studies are ongoing at this time at our center.
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- Contact person: Susan Walsh, MSN, RN
- Phone: 717-652-2800
- Fax: 717-652-8191
- E-mail: walshnurse@aol.com
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- Record last reviewed:
- 24 Jun 2002
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Pittsburgh - MDA-ALS Center at the
University of Pittsburgh Medical Center
- Falk Clinic
200 Lothrop Street, 7th Floor
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania 15213
- Phone: 412-647-1706
- Fax: 412-547-8398
- E-mail: molczanrs@upmc.edu
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- Medical Director:
- David Lacomis, M.D.
- Specialty:
- Neuromuscular disorders
- Other neurologists:
- Sasa Zivkovic, M.D.
- Other medical specialties:
- Palliative care, social work, physical therapy, occupational therapy, speech and swallowing specialist, respiratory therapist, nurse practitioner, nutritionist, pulmonologist
- Other diseases/conditions treated:
- See the University of Pittsburgh's Neurology home page (http://www.neurology.pitt.edu/Specialty_clinics.htm) for information about other clinics (including the MDA clinic) and other diseases treated.
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- Research emphasis:
- Outcomes based clinical trials research
- Quality of life
- Tissue banking (Robert Bowser, Ph.D.)
- ALS biomarkers in the cerebrospinal fluid and serum (with Robert Bowser, Ph.D.)
- Frontotemporal dementia
- Clinical trials in progress:
- Celebrex in subjects with amyotrophic lateral sclerosis (closed).
- Recombinant methionyl human brain-derived neurotrophic factor (r-metHu BDNF) given by daily subcutaneous injections to patients with amyotrophic lateral sclerosis (closed).
- A phase II-III prospective, randomized, double blind placebo controlled, dose-ranging safety and efficacy study of recombinant human ciliary neurotrophic factor (rHCNTF) in patients with amyotrophic lateral sclerosis (closed).
- Open label trial of Riluzole in amyotrophic lateral sclerosis (closed).
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- Contact person: Rebecca Molczan, CRNP
- Phone: 412 692-4917
- Fax: 412 647-8398
- E-mail: molczanrs@upmc.edu
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- Record last reviewed:
- 30 May 2006
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