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Do You Suspect a Patient Has ALS?

Get a fast-track appointment, a definitive diagnosis and concierge-level care at the Penn Comprehensive ALS Center.

For the past 17 years, the Penn Comprehensive ALS Center has evaluated, diagnosed and cared for thousands of patients with ALS and their families. A patient suspected of having ALS gets a fast-track appointment at the Center’s clinic. Instead of waiting months for an evaluation — an individual is seen within a few weeks — so comprehensive, compassionate care can start.

Leo McCluskey, MD, MBE, director of the nationally recognized ALS Center at Penn since 1999, says, “There is a reluctance to make this diagnosis because of its dire implications.” The Penn ALS team is able to make a faster, more accurate diagnosis because of the breadth of experience and the clinical infrastructure.

A diagnosis of ALS relies mostly on old-school clinical medicine and less on high tech tools. “Through the years, we have witnessed virtually every presentation of this disease, so we offer a high level of confidence to each diagnosis, ” says Lauren Elman, MD, neurologist, fellowship trained in neuromuscular medicine with a concentration in ALS.

Interdisciplinary resources to handle ever-changing symptoms

Dr. McCluskey explains, “Together, Dr. Elman and I offer 50 years of ALS clinical and research experience to patients.” In addition, a full-time ALS staff includes Mary Kelley, ALS Nurse Practitioner, MSN, RN, CRNP, and Kelly Almasy, RN, CRC, a full-time ALS research coordinator.

Multidisciplinary ALS care includes: pulmonology, physical and occupational therapy, speech therapy, nutrition, social services, behavioral health resources, assistive technology and the opportunity to participate in research protocols. Riluzole is recommended to slow progression in most patients. Drs. Elman and McCluskey have extensive experience in the use of medications and medical devices that help to manage the many varied symptoms that adversely affect patient quality of life throughout the course of the disease.

On-going education for patients and families includes information about the disease process and regular updates on the latest research initiatives.

A Penn clinician is on call 24 hours a day to answer questions and address concerns.

Penn research: Hope on the horizon

Penn is a research nexus — deeply involved in multidisciplinary clinical and basic research to increase the understanding of the causes and mechanisms leading to brain dysfunction and degeneration in ALS.

ALS clinical trials are ongoing at Penn. If a patient chooses to participate in research and does not fit the criteria for a Penn study, the Penn ALS research coordinator will help a patient locate an appropriate trial at another hospital. Penn is involved in many collaborative research organizations including the Northeast ALS Consortium, the Western ALS Study Group and the ALS Research Group.

One of the world’s largest ALS databases

Dr. Elman has created one of the world’s largest repositories of ALS clinical data that includes a patient’s clinical disease progression, blood samples and genetic information. This database has been useful for gaining an understanding of how the disease progresses within individuals and what factors are most important for prognosis. It has served as a tool to unite Penn clinicians and basic scientists in research.

Genetic counseling at no charge

Approximately ten percent of ALS is familial and is inherited in an autosomal dominant fashion. When there is a known family history of disease, genetic testing is often recommended. In some cases, patients without a family history may desire genetic counseling and may also choose to have genetic testing. This is a difficult area as all of the genes responsible for familial ALS have not yet been described so the interpretation of genetic testing results must be done with caution and skill. At the Penn Center, there is a genetic counselor on hand for this task.

From day one through Hospice

Throughout the duration of the disease, Penn clinicians provide patients and their families with the resources to achieve the best possible level of neurological functioning and the highest quality of life.

Helping patients clinically manage their speech and swallowing difficulties, as well as slowing progressive respiratory failure are of utmost concern, “ says Dr. Elman. Equally important is providing patients and caregivers with better ways of coping emotionally as function declines.

Both Dr. McCluskey and Dr. Elman also serve as ALS Hospice physicians. Dr. McCluskey explains, “We are dedicated to our patients and their families throughout this journey --- from its beginning to when it ends. It is the right thing to do.

Do you suspect your patient has ALS?

Get a fast-track appointment for a definitive diagnosis and ongoing care at the Penn Center for ALS. Call Mary Kelley at (215) 829-3053.

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