In the age of Big Data, we’re all sick of being reduced to statistics and crunched by algorithms. But the National Limb Loss and Preservation Registry (LLPR) is one case where amputees might make an exception.
Launched this spring by the National Institutes of Health (NIH) in partnership with the Mayo Clinic and the Thought Leadership and Innovation Foundation, the Registry is meant to fill the chronic gap in reliable information about the US amputee population. The absence of comprehensive, verified data has impeded efforts to reduce the number of preventable amputations, improve post-surgical care, and promote long-term health and quality of life among people who’ve lost a limb. The information shortfall has also made it difficult for amputees and their families to educate themselves about limb loss.
Similar to national registries for diabetes, cancer, and other medical conditions, the LLPR will gather and track data on a wide range of metrics. In addition to helping prosthetists, scientists, doctors, engineers, and other professionals better serve the limb-loss population, the project’s sponsors hope the Registry will enable amputees to advocate for themselves more effectively and find the resources they need more easily.
Here’s a quick primer about the LLPR. For more information, check the project’s website at llpregistry.org.
How will the data be compiled?
The Registry will gather information from multiple sources. According to project director Kenton Kaufman of the Mayo Clinic, major hospital systems (including the VA) and prosthetic clinics will be two key sources. Individual amputees can also play a critical role by actively updating their data over time.
What type of data will be collected and tracked?
At the most basic level, the Registry will gather information on demographic factors (such as age, sex, location, and race) and socioeconomic status (such as income and education). The project will also track information about prosthetic usage (including cost, insurance coverage, and device type). But the most important evidence will relate to quality of life: employment status, physical activity, mental well-being, relationship status, and overall health.
Who will have access to the data?
All registered users can view general data via the Registry dashboard. Researchers, healthcare providers, and other professionals will be able to slice and dice information at a more granular level. The Registry is meant to support better outcomes in multiple fields, including surgery, prosthetic care, physical and occupational therapy, bioengineering, health economics, public policy, insurance, recreation, and social services.
Will my privacy be protected?
Absolutely. The LLPR database is fully encrypted, governed by HIPAA standards, and compliant with data-security protocols of the National Institutes of Standards and Technology and the Federal Risk and Management Authorization Program. No end user can access personally identifiable data under any circumstances.
How will the Registry make my life better?
In an immediate sense, you can directly access Registry data to understand how your experience compares to that of other amputees who share your demographic and health characteristics. Over time, the Registry will enable healthcare providers and policymakers to understand what’s working and what isn’t, gradually resulting in better care and stronger support for people with limb loss.
Where can I sign up for the Registry?
You can join at llpregistry.org/join. There’s no cost to open an account.