Massachusetts General Hospital

Improving access to highly specialized care using state-of-the-art telemedicine

15/Dec/2010

December 15, 2010 — Portland, Maine and Boston, Mass.

The ALS~Maine Collaborative and the Massachusetts General Hospital (MGH) today announced the launch of a partnership focused on reducing disparities and improving access to highly specialized care for patients with Amyotrophic Lateral Sclerosis (ALS) throughout Maine, regardless of their geographic location. Utilizing state-of-the-art, secure, high-definition videoconferencing and online collaboration technologies, the MGH-Maine ALS TeleCare Network aims to provide assistance to Mainebased clinicians, patients with ALS, and their caregivers in a cost-effective and efficient manner. MGH specialists will provide ongoing care to existing MGH patients with ALS (pALS) who reside in Maine in their homes or in the doctor’s office using these two-way, interactive audio
and video technologies.

In the future, Maine physicians will hopefully use these same technologies to easily collaborate with highly specialized ALS providers at MGH in real-time to diagnose and treatment new patients. With the assistance of a local provider, the multidisciplinary clinical team located in Boston can remotely examine the patient, review radiology images and lab results, and quickly identify the best treatments in collaboration with local providers. Another important element of the partnership will be the development of a multifaceted educational program. By combining on-site and online learning experiences, the MGH hopes to creatively apply knowledge and technology to offer targeted educational sessions to Maine-based providers. The partnership will also develop online multimedia information resources designed to educate providers, caregivers, and patients and improve the overall care of Maine residents
suffering from ALS.

“This partnership very effectively extends MGH’s world renowned expertise in ALS care to the local communities of Maine” says Cory Gardiner, the president of the ALS~Maine Collaborative. According to Dr. Merit Cudkowicz, the Director of Neuromuscular Services and Neurology Clinical Trials at Massachusetts General Hospital, “This real-time videoconferencing will allow our clinical team to better manage our patients in between their scheduled office visits, and will allow for the timely, efficient, and meaningful exchange of information and ideas between our MGH team, Maine-based providers, and their patients. It will allow us to monitor an ALS patient’s plan of care, and also determine if the patient is eligible for an advanced treatment or a clinical research trial that might reduce the extent of their disability or improve their long-term outcome.”

About Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease
Approximately 5,600 people in the U.S. are newly diagnosed with Amyotrophic Lateral
Sclerosis (ALS) each year, and it is estimated that as many as 30,000 Americans may have the
disease at any given time. ALS is a uniformly rare, progressive and fatal neurodegenerative
disease that affects nerve cells in the brain and the spinal cord. The ability of the brain to initiate
and control muscle movement is eventually lost, and patients in the later stages of the disease
often become totally paralyzed. Muscles that control vital functions such as speech, swallowing
and later breathing progressively weaken. Because ALS is considered an “orphan disease” (i.e. a
rare disease that affects fewer than 200,000 people) the expertise needed to accurately diagnose
and care for ALS patients is often not available. Patients and caregivers travel long distances to
urban centers for appropriate medical care. As a patient’s disease progresses, however, it
becomes increasingly more difficult for both the patient and caregiver to seek care at a distant
facility. Eventually, patients may arrange hospice care, while others utilize VNA. Many patients
are lost to follow-up.

About the ALS~Maine Collaborative
The ALS~Maine Collaborative is an independent non-profit organization based in Maine
focused on the causes, prevention, treatment and development of a cure for ALS. They raise
awareness and educate patients, families, caregivers and the general public about ALS, and seek
to remove the barriers that stand in the way of improving the care of persons with ALS in Maine
and beyond. For more information about the Collaborative visit http://alsmaine.org .
About the Massachusetts General Hospital
Founded in 1811, the MGH is the third oldest general hospital in the United States and the oldest
and largest in New England. The 900-bed medical center offers sophisticated diagnostic and
therapeutic care in virtually every specialty and subspecialty of medicine and surgery. Each year
the MGH admits more than 46,000 inpatients and handles nearly 1.5 million outpatient visits at
its main campus and health centers. Its Emergency Department records nearly 80,000 visits
annually. The surgical staff performs more than 35,000 operations and the MGH Vincent
Obstetrics Service delivers more than 3,500 babies each year. The MGH conducts the largest
hospital-based research program in the country, with an annual research budget of approximately
$500 million. It is the oldest and largest teaching hospital of Harvard Medical School, where
nearly all MGH staff physicians serve on the faculty. The MGH is consistently ranked among the
nation's top hospitals by US News and World Report. For more information, visit
http://www.massgeneral.org

Media Contacts:
Corey Gardiner
President
ALS~Maine Collaborative
(207) 370-4ALS (4257)
Peggy Slasman

Public Affairs
Massachusetts General Hospital
617-726-2000

Program Contacts:
Darlene Pulley, RN
Massachusetts General Hospital
617-726-2000