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The National Osteoporosis Foundation Launches a First of its Kind Tool to Collect Patient Input for the Osteoporosis Field

National Osteoporosis Foundation   (NOF)

June 27, 2019

Approximately 10 million Americans age 50 and above have osteoporosis and another 44 million have low bone density, placing them at increased risk for bone fracture. Bone fractures related to osteoporosis are responsible for more hospitalizations than heart attacks, strokes and breast cancer combined. To hear directly from patients about the impact of the disease on their lives, the National Osteoporosis Foundation (NOF) announces the launch of the Healthy Bones for Life™ Patient Registry.

The Healthy Bones for Life™ Patient Registry gives individuals with osteoporosis (weak or brittle bones) or osteopenia (low bone density) the power to improve how care is provided by sharing their experiences.

This first of its kind tool in the osteoporosis field surveys patients and caregivers about fracture history, risk factors, treatment plans, symptoms, and lifestyle changes, to name a few. This patient-reported information is collected anonymously, combined and analyzed by NOF to map the patient journey. This map will help NOF and the broader bone health community understand what patients need and want most.

“We are excited to launch a valuable tool that enables people with osteoporosis to tell their story, said Elizabeth Thompson, CEO of the National Osteoporosis Foundation.  “This tool has been missing from the field of bone health for far too long and we are delighted to provide it to hear and learn directly from patients and caregivers.”

Click here to access Healthy Bones for Life™ Patient Registry.

Understanding the osteoporosis patient journey is vital to raising the awareness of patients, physicians, researchers, regulators, payers, and others about the seriousness of the disease.  The data collected, and the forthcoming trends outlined by this data, will be shared with the osteoporosis community, including those who participate in the registry surveys.  Insights from the data may also be shared with healthcare professionals and NOF partners. This data and patient insight will lead to better care and research about the disease and help improve the bone health of future generations.

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