Patients Are Waiting

“In rare disease drug development it is typical for the sponsor company developing an investigational therapy to meet with the patients or family members involved in the clinical trials. I have met many such patients over the years and listening to their stories of courage and determination is truly an inspiration. It becomes obvious that…
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The Future of Medical Device Registries

A registry is broadly defined as a collection of information about individuals, usually focused around a specific diagnosis, condition, or intervention. Individuals may provide information about themselves to a registry on a voluntary basis either directly or through their physicians. A registry can be sponsored by a government agency, nonprofit organization, health care facility, or…
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Decluttering Your Protocol

Marie Kondo is a “decluttering” expert who has made cleaning out the garage the hippest thing since brewing beer in the basement. Kondo’s international bestselling book, The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing, shows us how to simplify our lives, closets, and junk drawers by applying one basic principle:…
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A “Like “ for Using Social Media in Clinical Research

Recently, I was astonished by the conversation taking place at a Massachusetts Biotechnology Council (MBC) Forum on the topic of using social media to encourage open dialogues with patients and patient advocacy groups. Social media has become an effective method for patients to connect with one another and also to key opinion leaders and experts…
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