• Sustain's Public-use Data Sets

    Sustain encourages widespread use of its data resources to address policy-related issues and to improve the care of people on home parenteral nutrition. To promote research in these areas, Sustain has released public-use data sets.

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  • What People Are Saying About Sustain

    Data collection efforts for HPN patients in the US have been very limited over the last 20 years. Consequently, attempting to determine the long-term outcomes for these patients is very difficult.  It is hoped that Sustain will be able to fill this gap with useful knowledge about the HPN patient population so that many key questions can be answered. 

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  • About Sustain

    Sustain™, LLC: A.S.P.E.N.’s National Patient Registry for Nutrition Care is a comprehensive, web-based tool that allows clinicians to enter patient data, measure and analyze results, benchmark outcomes against aggregate data, and publish findings. The purpose of Sustain is to maintain a prospective nutrition therapy registry in order to improve patient outcomes. The registry is designed to address multiple aspects of nutrition care. Sustain's initial phase was focused on Home Parenteral Nutrition (HPN). The goals of this phase are complete, with the last patient data entered by January 31, 2015. Current efforts now focus on encouraging public use, analysis, and dissemination of this rich and unique data repository. 

    The specific goals of Sustain HPN are to:
    1. Collect information regarding the patients and populations who require HPN in the U.S.,
    2. Measure outcomes associated with HPN,
    3. Allow institutional benchmarking against the aggregate data,
    4. Publish and disseminate findings in order to improve the quality of care for patients receiving HPN, and
    5. Encourage public access and use of this data resource to address policy-related issues and improve patient care

    HPN has allowed patients with intestinal failure a life-saving option and some individuals have survived for over 30 years on this therapy. HPN is indicated when the need for parenteral nutrition is greater than 2 weeks and the patient no longer requires hospitalization.

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