Sustain National Patient Registry for Nutrition Care

Sustain™, LLC: ASPEN’s National Patient Registry for Nutrition Care was a comprehensive, web-based tool that allowed clinicians to enter patient data, measure and analyze results, benchmark outcomes against aggregate data, and publish findings. The purpose of Sustain was to maintain a prospective nutrition therapy registry in order to improve patient outcomes. The registry was 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 and the registry is closed. Current efforts now focus on encouraging public use, analysis, and dissemination of this rich and unique data repository.

The specific goals of Sustain HPN were 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
  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.

How to Access Sustain Data

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 data sets that are available for public use.

What is included in Sustain’s public-use data sets? 
  • Analysis-ready data sets that contain both cross-sectional and longitudinal data describing Sustain participants, their health profiles, and outcomes
  • The first 2.5 years of data collection in the Sustain Registry
    Data sets - available January 2015
    • Baseline data for 1,251 HPN patients through February 14, 2014
    • Follow-up data for ~1,000 patients through February 14, 2014             
     
Who can acquire Sustain’s public-use data sets?  
 
  • Students
  • Faculty
  • For-profit and not-for-profit organizations
  • Other non-academic institutions
What can Sustain’s public-use data sets be used for?
  • Hypothesis generation and hypothesis testing in the area of HPN
  • Research training for students
  • Manuscript preparation
  • Preliminary research for grant applications
What are the steps for obtaining Sustain’s public-use data sets? 
 
  • Read and complete Sustain’s Scientific Query Protocol, and submit your proposal to Peggi Guenter.
  • Utilize the following additional documentation to support your proposal:
    • A data directory that describes variable in the data sets.
    • A study binder that contains information about Sustain, including the Registry's rationale, operations, protocols, and regulatory considerations.
     
  • Your proposal will be reviewed by Sustain’s Scientific Council, and if your application is approved, you will sign a data-use agreement.
What do Sustain’s public-use data sets cost? 
  • Free for students and faculty at institutions that participate in the Sustain registry
  • $250 for students at non-participating institutions
  • $1,000 for faculty at non-participating institutions
  • ASPEN will negotiate a fee associated with collaboration with non-academic institutions.

What additional resources are helpful? 
 
 
List of Approved Scientific Analyses

Plans for published research articles from Sustain data:  

 
  1. Characteristics of Home Parenteral Nutrition Patients from the Sustain Registry: August 2011-February 2014. Marion F. Winkler, PhD, RD, LDN, CNSC, FASPEN, et al. (published in Journal of Parenteral and Enteral Nutrition)
  2. Intravenous catheter outcomes in over 1000 home PN patients. Vicki M. Ross, RN, PhD, CNSC, et al. (published in American Journal of Infection Control)
  3. Nutrition Management of Home Parenteral Nutrition Among Patients With Enterocutaneous Fistula in the Sustain Registry Charlene Compher, et al. (published in Journal of Parenteral and Enteral Nutrition)
  4. The Incidence of Central Line–Associated Bloodstream Infections With Intravenous Fat Emulsion Infusion in Patients on Home Parenteral Nutrition Mireille Hamdan, et al. Abstract of Distinction, (published in Journal of Parenteral and Enteral Nutrition)
  5. Characteristics and outcomes of HPN patients with short HPN use. Marion Winkler, PhD, RD, LDN, CNSC, FASPEN, et al. (under development)
  6. Characteristics and outcomes of HPN patients with obesity and/or s/p bariatric surgery (under development)
  7. Characteristics and outcomes of pediatric HPN patients. Sustain Pediatric Site Investigators. (under development)