How Registry Data Will Change Our Approach to Lymphedema Research and Clinical Management

Abstract

In 2018 the American Physical Therapy Association officially launched the Physical Therapy Outcomes Registry (PTOR). The purpose of the registry is to accumulate clinical data from therapists around the country in order to analyze aggregate information on patient populations. Such an approach can help our profession better understand how to optimize treatment outcomes and can enhance data-driven clinical decision making. Additionally, a recent collaborative effort between Stanford University and the Lymphatic Education & Research Network (LE&RN) has created The International Lymphatic Disease and Lymphedema Patient Registry and Biorepository, a patient registry that aims to collect information about individuals who are diagnosed with a lymphatic disease or lymphedema. While these efforts are both Registries of condition-specific data, they are different in how they collect data and produce information. Researchers and clinical providers should have an understanding of what registry data currently exists and what the opportunities are to support clinical lymphedema management and lymphedema-focused research efforts by leveraging registry data.