Loyola Joins Rare Lung Diseases Consortium | Loyola Medicine
Monday, June 15, 2015

Loyola joins Rare Lung Diseases Consortium

Network will study LAM, HPS, PAP and other rare lung diseases

MAYWOOD, IL – Loyola University Medical Center is the only center in Illinois to join the newly launched Rare Lung Diseases Consortium, which will spearhead cutting-edge research on rare lung diseases.

The consortium is a unique collaboration among patient groups, researchers and the National Institutes of Health. Its mission is to conduct research into new diagnostic tests and treatments; provide clinical research training and focused clinical care; and educate patients, physicians, researchers and the public about rare lung diseases. There are 29 U.S. and 18 international clinics in the consortium.

The consortium is interested in more than 20 rare lung diseases, and initially will study these three: lymphangioleiomyomatosis (LAM), Hermansky-Pudlak sydrome (HPS) and pulmonary alveolar proteinosis (PAP).

LAM almost exclusively affects women. Symptoms of the debilitating disease include shortness of breath, chest pain, chronic cough and lung collapse. As the disease progresses, many patients must go on oxygen, and some require lung transplants. LAM can cause death from respiratory failure. Loyola will participate in two new LAM clinical research projects.

Loyola’s LAM clinic treats more than 60 LAM patients, making it the largest LAM clinic in the Midwest.  “We manage the spectrum of LAM issues, ranging  from minor shortness of breath to lung transplantation,” said Daniel Dilling, MD, medical director of Loyola’s lung transplantation program and LAM Clinic.

HPS is a rare hereditary disorder that can cause a range of problems, including a form of pulmonary fibrosis (scarring of the lungs) that makes breathing increasingly difficult. Without a lung transplant, HPS typically is fatal within 10 years of onset. Loyola will participate in a study of how HPS develops over time.

PAP is characterized by the build-up of grainy material called surfactant in the alveoli (air sacs) of the lungs. This can lead to breathing problems and, in severe cases, respiratory failure. PAP can become progressively worse, remain stable or spontaneously clear in a small percentage of patients.

Loyola has the oldest and largest lung transplantation program in Illinois. Loyola has performed more than 800 lung transplants, by far the most of any center in the state. Loyola’s multidisciplinary lung transplantation team provides patient-centered care and individualized treatment plans.

Learn more about Loyola’s lung transplantation program.

For information on the Rare Disease Lung Consortium, visit the RDLC web site.

About Loyola Medicine and Trinity Health

Loyola Medicine, a member of Trinity Health, is a quaternary care system based in the western suburbs of Chicago that includes Loyola University Medical Center (LUMC), Gottlieb Memorial Hospital, MacNeal Hospital and convenient locations offering primary and specialty care services from 1,877 physicians throughout Cook, Will and DuPage counties. LUMC is a 547-licensed-bed hospital in Maywood that includes the William G. and Mary A. Ryan Center for Heart & Vascular Medicine, the Cardinal Bernardin Cancer Center, a Level 1 trauma center, Illinois's largest burn center, a certified comprehensive stroke center and a children’s hospital. Having delivered compassionate care for over 50 years, Loyola also trains the next generation of caregivers through its teaching affiliation with Loyola University Chicago’s Stritch School of Medicine and Marcella Niehoff School of Nursing. Gottlieb is a 247-licensed-bed community hospital in Melrose Park with 150 physician offices, an adult day care program, the Gottlieb Center for Fitness, the Loyola Center for Metabolic Surgery and Bariatric Care and the Loyola Cancer Care & Research at the Marjorie G. Weinberg Cancer Center at Melrose Park. MacNeal Hospital is a 374-bed teaching hospital in Berwyn with advanced inpatient and outpatient medical, surgical and psychiatric services, advanced diagnostics and treatments. MacNeal has a 12-bed acute rehabilitation unit, a 25-bed inpatient skilled nursing facility, and a 68-bed behavioral health program and community clinics. MacNeal has provided quality, patient-centered care to the near west suburbs since 1919.

Trinity Health is one of the largest multi-institutional Catholic healthcare systems in the nation, serving diverse communities that include more than 30 million people across 22 states. Trinity Health includes 92 hospitals, as well as 109 continuing care locations that include PACE programs, senior living facilities and home care and hospice services. Its continuing care programs provide nearly 2.5 million visits annually. Based in Livonia, Mich., and with annual operating revenues of $18.3 billion and assets of $26.2 billion, the organization returns $1.1 billion to its communities annually in the form of charity care and other community benefit programs. Trinity employs about 129,000 colleagues, including 7,800 employed physicians and clinicians. Committed to those who are poor and underserved in its communities, Trinity is known for its focus on the country's aging population. As a single, unified ministry, the organization is the innovator of Senior Emergency Departments, the largest not-for-profit provider of home health care services—ranked by number of visits—in the nation, as well as the nation’s leading provider of PACE (Program of All Inclusive Care for the Elderly) based on the number of available programs.