Data is Power When it Comes to Advancing Health Research

The underrepresentation of people with limb loss and limb difference in clinical research impedes the care provided, lowering health outcomes.  

The need for comprehensive research on limb loss and limb difference health is paramount. Across various conditions—such as heart disease, arthritis, diabetes, and chronic pain, there are gaps in our understanding and treatment approaches. Gaps that can only be filled if members of our community are involved in the research from the very beginning and engaged in the research throughout.  

More data about the health experiences of people with limb loss will help inform a better understanding of unique health needs of this population. Where does this data come from? The routine operation of the modern healthcare system produces a wealth of data in electronic health records, research databases (i.e. PCORnet®¹ and All of Us Research Hub², and clinical registries (like the Limb Loss and Preservation Registry³). There is a great potential for utilizing these routine data for health research and to derive new knowledge about health, disease, and treatments.  

We are committed to bringing together these sources of data—combining what is available through the research surveys, electronic health records, patient reported outcome measures, and wearable fitness monitors—to scale up the data repository and with it the potential for discovery among researchers. We still have more work to do, but our efforts are aimed at helping you be a well-informed advocate for your healthcare and to create opportunities for your engaged participation. For a current listing of research studies that you can join, visit our Volunteer Research Opportunities webpage. 

Related Resources: 

1. The Patient Centered Outcomes Research Institute (https://www.pcori.org/) 
2. All of Us Research Hub (https://allofus.nih.gov/) 
3. Limb Loss and Preservation Registry (https://www.llpr.org/)