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.