Marion F. Winkler, PhD, RD, LDN, CNSC, Rhode Island Hosptial
For the first time, cross-sectional data from the Sustain Registry are available in public-use data sets. These data sets are ideal for clinical and policy-related analysis concerning patients on home parenteral nutrition (HPN). Sustain is A.S.P.E.N.’s national HPN patient registry whose goal is to improve patient outcomes through clinical research. We spoke with Marion F. Winkler, PhD, RD, LDN, CNSC to learn about how the data sets benefit the field of clinical nutrition.
Q: What is your role in Sustain?
Marion: I have served as co-chair of the Sustain Scientific Council since 2008 when A.S.P.E.N. began developing the Home Parenteral Nutrition (HPN) registry. I also participate in data entry at my hospital as we are enrolled in Sustain as a site for adult and pediatric HPN.
Q: How will Sustain’s public-use data sets benefit the field of clinical nutrition?
Marion: The Sustain Registry is a valuable resource about the annual utilization of HPN in the U.S., parenteral nutrition formulas and patterns, and adult and pediatric clinical outcomes — information, which is not currently known. The public-use data are analysis-ready and will aid researchers in hypothesis generation and hypothesis testing in areas of HPN. Ultimately the data will help nutrition support specialists and institutions/providers benchmark the appropriate use of HPN, make better-informed patient treatment decisions, and translate results into improved patient outcomes.
Q: What are some unique ways that Sustain’s public-use data sets can be used to address important issues in HPN?
Marion: Specific areas of interest with respect to outcomes include: length of HPN therapy further categorized by diagnosis, catheter infection rates, complications, hospital readmission rates, nutrition and functional status relationships, pediatric growth and development, PN formula patterns, and mortality. We will be able to evaluate similarities and differences in practice and outcomes for adult and pediatric HPN patients and between the U.S. and other international registries.
For more information about Sustain or to access the data sets, please visit the Sustain website.
