Limb Loss and Preservation Registry Enters New Era

In the two years since its operational launch, the Limb Loss and Preservation Registry (LLPR) has begun taking shape as a transformative data resource. Clinicians and researchers are already using the Registry to guide decisions and improve patient outcomes, tapping a repository that includes roughly half a million limb-care patients and more than 11 million individual episodes of care. And it’s growing rapidly every month, giving healthcare organizations and policy makers the robust information they’ve always needed to develop more effective, more equitable amputee care.

With the expiration of startup funding from the National Institutes of Health and other federal agencies, the LLPR is passing into the stewardship of the Thought Leadership & Innovation Foundation (TLI), which helped build the Registry in collaboration with the Mayo Clinic. “The LLPR has been instrumental in standardizing, measuring, and reporting patient outcomes data to enhance limb loss treatment and preservation efforts nationwide,” says Shawn Murphy, TLI’s vice president and the Registry’s acting executive director. “With this transfer of ownership, TLI is poised to further the LLPR’s mission of improving the quality, safety, effectiveness and cost of limb loss and limb difference treatment and preservation.”

TLI will operate the LLPR in partnership with the Amputee Coalition. Stakeholders from all parts of the limb-loss community will help guide the LLPR via representation on advisory councils. (Full disclosure: Western Media, Amplitude‘s parent company, is a supporting Registry partner but does not have a financial stake in the project.)

There are also plenty of ways for individual amputees, prosthetists, caregivers, and others to support the Registry and reap its benefits. As the new leadership take the reins, here’s how you can help the LLPR continue to build its capacity to promote health and improve services for the limb-loss community.

1. Encourage your healthcare clinicians to share data with the Registry.

The LLPR gathers data from partners in more than 20 states, but there’s lots of room to grow. Send your prosthetist, doctors, allied health providers, and other clinicians to so they can learn how a Registry affiliation can support their practice.

2. Ask your clinicians to use LLPR data in decisions regarding your care.

What type of foot is most likely to prevent falls for an amputee of your age, weight, and K-level? Is your physical therapist pushing you too hard, or not hard enough? What’s the success rate of the neuroma surgery you’re facing, and are any nonsurgical options just as effective? The LLPR is designed to yield targeted, evidence-based answers to these types of questions.

3. Help raise funds to support the Registry.

Ultimately, the LLPR will equip amputees with data to guide their own limb-care decisions, while supporting advocates’ efforts to secure better insurance and more effective healthcare for amputees. To realize its full potential, the Registry needs to build a strong foundation as it transitions away from government funding. If you’re in a position to help, chip in what you can at

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