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This summer, BWH, Harvard Medical School and the LAM Treatment Alliance joined forces to open a first-of-its-kind center for LAM research and clinical care.
LAM – lymphangioleiomyomatosis – is a rare, often-fatal, multi-symptom disease that occurs almost exclusively in women and affects the lungs, kidneys and lymphatic system. There is no known cure for LAM, and it is commonly misdiagnosed as asthma, emphysema or bronchitis.
This new center offers comprehensive and multi-disciplinary care to women at all stages of the disease, as well as education, support and the opportunity to participate in clinical trials. “The combination of comprehensive clinical care and leading-edge research creates an ideal setting in which to increase our understanding of the causes and optimal treatment of LAM,” said Director Elizabeth Henske, MD.
Working closely with BWH experts in urology, OB/GYN, imaging, oncology, thoracic surgery, mental health, reproductive medicine and nutrition, the team thoroughly addresses the diverse needs of women with LAM.
Betsy Peters, BSN, RN, the center’s nurse coordinator, is the first point of contact for patients. “Every woman copes with her diagnosis differently,” she said. “My role is to be that person patients can lean on. I support women at all different stages of their diagnosis and clinical management, and help connect them with all of the resources the center has to offer, including research studies and clinical trials.”
The center strives to fast-track research and clinical trials to learn more about LAM in order to best educate patients and care providers about the disease. “The rapid translation of research to therapy means that we can make a difference for women who are living with LAM today,” Henske said.
To this end, the center completed enrollment this year for a clinical trial of a novel therapeutic agent in LAM and published an article with potential patient care implications in PNAS (the Proceedings of the National Academy of Sciences of the United States of America).
“Our process has been to explore collaboration among different communities to see – in both a clinical and research setting – how our approaches to patient care and research trials can overlap and what we can learn from each other to better serve the patient with LAM,” said Hilary Goldberg, MD, MPH, one of the pulmonologists affiliated with the center. “By taking our efforts to a regional, national and international level, and actively partnering with other clinical care institutions globally, we are able to gain insights from many different disciplines that might apply in the LAM setting. This allows us to communicate very quickly from research lab to clinical trial.”