Posts for the month of October 2014

How to prescreen study participants via Pioneers?

Once you have your study listed on Pioneers, you can attach a study interest form to your study.

When a Pioneers user fills out the study interest form, you will immediately receive their contact information without having to go through an additional process.

There are two types of study interest forms:

  1. Basic Study interest form:
    • Has only one question where a participant can express their willingness to be contacted for your study.
    • Is pre-built by Pioneers team.
  1. Customized study interest form
    • Is developed by the study team to ask pre-screening questions.
    • needs to be approved HSC/IRB and the Pioneers team can assist with this.
    • needs to be approved by the Pioneers DRC and, the Pioneers team can assist with this.
    • needs to be approved by the sponsor, if the study is industry supported and Pioneers team can assist with this.

If you are interested in immediate contact withy participants via Pioneers and

  1. already have your study listed on Pioneers:
    • you can send us an email at pioneersresearch@….
  2. do not have your study listed on Pioneers:
    • Fill out the Active Study Listing Request to list your study on Pioneers and select Yes for Would you like this study to include a Study Interest Form?.

How to list your Study on Pioneers?

Pioneers provides researchers can publish details about their studies on Pioneers to aid recruitment.

Visit Pioneers Active studies to browse the current list of studies on Pioneers.

Step 1

For your study to be published on Pioneers, it needs to:

  • be actively recruiting
  • have IRB approval

Step 2

If you study is actively recruiting and has an IRB approval, please fill out the Active Study Listing Request form.

You can choose to publish either the language in Clinicaltrials.gov or a customized lay-friendly description of your study.

Examples

Step 3

If in step 2 you selected Text formatted into lay-friendly, FAQ format

  • the Principal Investigator (PI) of the study has to approve the listing language before it can be posted on Pioneers.
  • and your study is an Industry Suported Study, the PI and the sponsor has to approve the listing language before it can be posted on Pioneers.

If in step 2 you selected Text pulled directly from ClinicalTrials.gov,

  • the study can be posted on Pioneers without any approval from the PI or the sponsor.

If you selected Yes for Would you like this study to include a Study Interest Form?, we will reach out to you for further details.

HERON Team offers support for complex searching, data access

Having trouble creating complex searches in HERON? Seeking support for your grant or proposal? Have funding?

Medical Informatics Services include searching and data access consultation with the HERON team on an hourly fee-for-service basis.

request a Medical Informatics consultation or contact MISupport@… to learn more.

As always, the Frontiers Lunch and Learn meets the 1st and 3rd Tuesdays of each month from 12:00 - 1:30 PM in room 3001D Student Center. Register in advance if possible but drop-ins are welcome. See the KUMC Calendar for the date of the next clinic.

HERON Saline Release integrates 1.6 billion observations from 8 data sources

The HERON Saline release includes data from the KU Hospital EMR, tumor registry etc. through September, 2014.

Having trouble creating complex searches in HERON? Seeking support for your grant or proposal? Note HERON Team offers support for complex searching, data access on an hourly fee-for-service basis.

Any publication that results from a project utilizing HERON should cite grant support (CTSA Award # UL1TR000001).

HERON Saline Contents Summary

This month, our tour of rivers and lakes in Kansas honors the Saline River.

The HERON repository contains approximately 1.6 billion real observations from the hospital, clinics, and research systems:

Observation Patients Source Go-Live Snapshot Issues
Allergy 537K 246K
KUH/O2/Epic Nov 2007 Sept 2014 various*
Cancer Cases 11.1M 75K
KUH Cancer Registry 1950s Sept 2014 labels*
Cardiology Labs 22.2M 333K
KUH/O2/Epic Nov 2007 Sept 2014
Demographics 19.8M 2.07M
KUH Billing (O2 via SMS) 1980s Sept 2014 various*
UKP Billing 2000 Sept 2014
30.2K 30.2K Frontiers participant registry Jun 2009 Sept 2014 #2451
194.5K 194.5K Social Security Death Index 1962 Sept 2014
Diagnoses (IDC9) 67.7M 781K
KUH/O2/Epic Nov 2007 Sept 2014 various*
UKP Billing 2000 Sept 2014
University HealthSystem Consortium (UHC) Q4 2008 June 2014
History 30.8M 417K
KUH/O2/Epic Nov 2007 Sept 2014
Lab Results 149M 364K
KUH/O2/Epic 2003 Sept 2014 various*
Medications 126M 425K
KUH/O2/Epic (Organized by VA Class) Nov 2007 Sept 2014 various*
Microbiology 3.31M 29.1K
KUH/O2/Epic 2003 (?) Sept 2014 various*
782K 121K Negative 2003 Sept 2014
10.3K 7.68K Positive 2003 Sept 2014
Nursing Observations 852M ?
KUH/O2/Epic Nov 2007 Sept 2014 various*
Procedure Orders 169M 556K
KUH/O2/Epic 2003 (?) Sept 2014 various*
Procedures (CPT) 13.6M 678K
UKP Billing 2000 Sept 2014 #26
REDCap 1.04M 48.7K
REDCap July 2011 Sept 2014
Reports/Notes 67.6M 404K
KUH/O2/Epic ? Sept 2014
Specimens 121K 8.83K
KUMC Biospecimen Repository ? Sept 2014
Visit Details 67M 940K
KUH/O2/Epic Nov 2007 Sept 2014
Hospital Quality Metrics 6.9M 93K
University HealthSystem Consortium (UHC) Q4 2008 June 2014 #2911
All 1.6B

Notice

Some material in the UMLS Metathesaurus is from copyrighted sources of the respective copyright holders. Users of the UMLS Metathesaurus are solely responsible for compliance with any copyright, patent or trademark restrictions and are referred to the copyright, patent or trademark notices appearing in the original sources, all of which are hereby incorporated by reference.

Misuse of the Limited Access Death Master File, NTIS, U.S. Department of Commerce data is subject to penalties under provisions of 15 CFR § 1110.200.

Beta Disclaimer

We are providing this early access to obtain feedback from you, the research community. While we are actively working on validating the data loaded into the system with hospital and clinic technical staff, there may be problems with our translation of data from our source systems (HospitalEpicSource and ClinicIdxSource) into HERON.

Please email us at heron-admin@kumc.edu if you discover information you believe may be erroneous.

We are actively working on enhancing the types of data included. Stay tuned to our roadmap to track progress toward upcoming releases.

Various Issues Still Apply

Keep in mind the issues noted in the original HERON beta notice, including:

Enhancements and Problems/Defects/Issues Addressed in this Release

Due to in-progress trac access policy issues, this section may be blank for a time.

#3034
portable Data Builder

Outstanding Problems/Defects/Issues