Welcome to the Healthy Bones, Build Them for Life® Patient Registry
If you or someone you love has osteoporosis (or weak or brittle bones) or low bone density, you have the power to improve how we care for these diseases by sharing your experiences.
A first of its kind tool in the osteoporosis field, the Healthy Bones, Build Them for Life® Patient Registry surveys patients and caregivers about how osteoporosis and low bone density impact their lives. This patient-reported information is collected anonymously, combined, and analyzed by the National Osteoporosis Foundation (NOF) to map out the patient journey. This map will show NOF and the broader bone health community what patients need and want most.
How does it work?
People living with and affected by all stages of osteoporosis are invited to participate in regular, ongoing surveys. These surveys will ask general questions and questions about how osteoporosis affects daily life.
NOF will combine the answers to these questions (while keeping the data secure and anonymous). This aggregate data will show the osteoporosis patient journey – how osteoporosis impacts people now and over the course of many years. This patient journey will give NOF and bone health professionals a roadmap to follow, pointing out knowledge gaps or unmet needs in the osteoporosis community, based on information that comes directly from patients.
Who is it for?
Patients: Anyone with osteoporosis or osteopenia can participate in the registry. Those who take care of someone with osteoporosis or low bone density can also participate.
National Osteoporosis Foundation: The patient journey will guide NOF’s programs and resources.
Sharing your experience with osteoporosis will guide and enhance the educational and awareness programs we offer, lead to better care and research about the disease, and help improve the bone health of future generations.
By participating in the Healthy Bones, Build Them for Life® Patient Registry, you will:
- Be able to compare your individual experience to the experiences of others;
- Showcase to patients, physicians, researchers, regulators, payers and others the seriousness of the disease;
- Demonstrate where patients need more information and pinpoint what additional resources would be helpful; and
- Help NOF to create programs that are most useful to patients and caregivers.
Your participation at work
Thanks to all those who have participated in the patient registry to date, NOF has been able to learn more about what life is like with osteopenia and osteoporosis. Click here for a summary of what NOF has learned so far. This is an ongoing initiative. We will continue to collect date from patients and caregivers, which will help us learn more about what you need most.
Your participation at work
To date, more than 900 individuals, have responded to our survey:
- 95% Female
- 94% White
- 98% Patients
- 2% Caregivers
- 45% Diagnosed around ages 50-59
We are continuing to collect data and your ongoing participation will help us learn even more!