ALS Care at Mayo Clinic Named Center of Excellence — The First in Florida

Tuesday, February 16, 2010

JACKSONVILLE, Fla. — A specialized center that treats a common neuromuscular disease, located within the Mayo Clinic campus in Florida, has for the 5th year been given the highest certification possible by the national ALS (Amyotrophic Lateral Sclerosis) Association.

The ALS clinic at Mayo Clinic in Jacksonville is the only ALS Association "Center of Excellence" in Florida and one of only four in the Southeast. ALS is also commonly referred to as Lou Gehrig's disease.

Like all ALS Association Centers, the clinic affords people living with the disease and their caregivers a wide range of multidisciplinary medical treatment and supportive care, according to the ALS Association. ALS is a progressive neurodegenerative disease, usually diagnosed between the ages of 55 and 70, caused by deterioration of nerve system cells that control voluntary muscle movement.

Patients can often need a wide variety of medical and supportive care. Mayo Clinic brings a team of specialized physicians, nurses, therapists (physical and occupational), a dietitian, a speech and language pathologist, social worker, pulmonologist, gastroenterologist and a psychiatrist and neuropsychologist, together to treat a population of about 100 ALS patients in a dedicated clinic space.

"We have a very dedicated group of health care professionals involved with our ALS clinic," said Kevin Boylan, M.D., who formed the clinic and serves as its medical director. "We are honored to receive certification of the ALS clinic by The ALS Association because this designation recognizes the high level of service we try to provide."

At its inauguration, Gary Leo, then president and CEO of the ALS Association noted "the certification of The ALS Association's first center in the Sunshine State is an important milestone for the people in the region living with ALS and for those who take care of them. The certification sends a ray of hope and a clear and comforting message to the ALS community that the clinic has been meeting our highest standards."

The Association's Florida Chapter, which provides the clinic with a chapter liaison who coordinates the needs of patients and families between clinic visits, was one of the biggest proponents of the certification. "This will take ALS care to the next level in Florida by expanding patient care and research," said Dara Alexander, president of the ALS Association Florida Chapter.

Dr. Boylan said ALS is a difficult illness to live with and a difficult one to manage. "We don't have a cure yet, but we are seeing progress in improving care for people with ALS. A comprehensive, multidisciplinary approach to ALS care is important in managing the wide range of problems that can occur in ALS. This is the goal of the ALS clinic."

The entire spectrum of treatment and care is provided during each office visit in a nurturing environment, versus multiple visits to multiple practitioners at different locales, which can increase stress in patients with limited mobility, Dr. Boylan says. In addition, communications between the multidisciplinary team members, who work side by side at the clinics, ensures that there is quicker intervention and that consistent quality care is provided, he says.

Nevertheless, the ALS clinic team strives to continually improve care, and one area of particular interest is cognitive impairment in ALS, Dr. Boylan says. The clinic's neuropsychologist is working with specialists at other ALS centers in the U.S. to develop a screening tool to help identify potential mental dysfunction in patients so that it can be effectively managed, he says.

Additionally, the ALS clinic also offers opportunities to participate in research studies to help determine the cause of ALS and lead to improved treatment, he says.

For example, researchers at Mayo Clinic in Jacksonville are studying genes that, when inherited, may cause or increase the risk of developing ALS, and they are also investigating the molecular biology of the disease to tease out the mechanisms involved. One associated goal is to develop reliable blood tests for ALS that may allow more direct measurement of nerve damage in ALS than current tests, which rely on measurement of physical strength. Early results using a prototype test are promising enough that Mayo Clinic is bringing together researchers at additional centers in the U.S. and Europe to undertake a large scale study of the test, he says.

In addition, ALS patients can participate in clinical trials testing new medications, or new uses of existing agents, to treat the disorder. One example is a study testing ceftriaxone, an antibiotic in long use that may offer neuroprotective effects in ALS. The study is funded by the National Institutes of Health. Other clinical trials are underway or soon to open at the clinic, Dr. Boylan says.

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