Skip Navigation Links

Project Information

DEVELOPMENT OF OUTCOME MEASURES FOR HIDRADENITIS SUPPURATIVA

Agency:
AHRQ

HHS/Agency for Healthcare Research and Quality

Project Number:
1K08HS024585-01A1
Contact PI / Project Leader:
KIRBY, JOSLYN S
Awardee Organization:
PENNSYLVANIA STATE UNIV HERSHEY MED CTR

Description

Abstract Text:
ABSTRACT Hidradenitis suppurativa (HS) is an important inflammatory disease, which affects approximately 1% of adults, and causes painful nodules, draining abscesses, and disfiguring scars that make walking, sitting, and working difficult or impossible. Progress to investigate HS is impeded by the lack of comprehensive outcome measures for use in trials and clinical care. Existing HS-specific disease severity tools are limited because signs of disease damage, such as discoloration and scarring, are either not captured or incorporated into a single score. In addition, some tools are impractical or not validated, reliable, or responsive. A disease-specific patient-reported outcome measure does not exist and given the impact of HS on patient well-being, it is vital to engage patients in outcome measurement. The goal of this proposal is to develop HS-specific measures to support accurate disease assessment. The specific aims of the proposed research are: (1) to test the hypothesis that a novel HS-specific patient-reported outcome measure will have substantial validity, reliability and responsiveness; (2) to test the hypothesis that a new provider-reported disease severity measure will have substantial validity, reliability and responsiveness. Patients with HS, age 18 or older, will be recruited from the PaTH network, an integrated clinical data research network across four Mid-Atlantic health systems, Penn State Hershey Medical Center, University of Pittsburgh Medical Center, Johns Hopkins Medical Center, and Temple Health System. The patients in the PaTH network are diverse; over 25% are non-white; 20% have public insurance or no insurance. The development and validation process will be based on the NIH PROMIS Instrument Development and Validation Scientific Standards. Briefly, we will include stakeholders, patients and providers, in the development and refinement of the tools. We will rigorously test the psychometric and measurement properties, including the reliability and validity, with the input of patients and providers. Finally, we will focus on evaluating the responsiveness of these novel patient- and clinician-reported outcome measures for HS.
Project Terms:
No terms available

Details

Contact PI / Project Leader Information:
Name:  KIRBY, JOSLYN S
Other PI Information:
Not Applicable
Awardee Organization:
Name:  PENNSYLVANIA STATE UNIV HERSHEY MED CTR
City:  HERSHEY    
Country:  UNITED STATES
Congressional District:
State Code:  PA
District:  15
Other Information:
Fiscal Year: 2016
Award Notice Date: 24-Aug-2016
DUNS Number: 129348186
Project Start Date: 01-Sep-2016
Budget Start Date: 01-Sep-2016
CFDA Code: 226
Project End Date: 31-Aug-2020
Budget End Date: 31-Aug-2017
Agency: ?

Agency: The entity responsible for the administering of a research grant, project, or contract. This may represent a federal department, agency, or sub-agency (institute or center). Details on agencies in Federal RePORTER can be found in the FAQ page.

HHS/Agency for Healthcare Research and Quality
Project Funding Information for 2016:
Year Agency

Agency: The entity responsible for the administering of a research grant, project, or contract. This may represent a federal department, agency, or sub-agency (institute or center). Details on agencies in Federal RePORTER can be found in the FAQ page.

FY Total Cost
2016 AHRQ

HHS/Agency for Healthcare Research and Quality

$160,175

Results

i

It is important to recognize, and consider in any interpretation of Federal RePORTER data, that the publication and patent information cannot be associated with any particular year of a research project. The lag between research being conducted and the availability of its results in a publication or patent award varies substantially. For that reason, it's difficult, if not impossible, to associate a publication or patent with any specific year of the project. Likewise, it is not possible to associate a publication or patent with any particular supplement to a research project or a particular subproject of a multi-project grant.

ABOUT FEDERAL REPORTER RESULTS

Publications: i

Click on the column header to sort the results

PubMed = PubMed PubMed Central = PubMed Central Google Scholar = Google Scholar

Patents: i

Click on the column header to sort the results

Similar Projects

Download Adobe Acrobat Reader:Adobe Acrobat VERSION: 3.41.0 Release Notes
Back to Top