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
    1. Baseline data for 1,251 HPN patients through February 14, 2014
    2. Follow-up data for ~1,000 patients through February 14, 2014

    Future data sets - available in April 2015
    1. Baseline data for ~1,600 patients through January 31, 2015
    2. Follow-up data for ~1,300-1,500 patients through January 31, 2015

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.
  • You 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
  • A.S.P.E.N. will negotiate a fee associated with collaboration with non-academic institutions.

What additional resources are helpful?

Contact Peggi Guenter for more information.