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Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry

Study Purpose

The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry (PA-IPF) is a cooperative project between five medical centers to coordinate a team of investigators. The aim of this registry will be: 1) To assess the extent of lung fibrosis in the commonwealth of Pennsylvania 2) To provide better access of patients with pulmonary fibrosis in all regions of Pennsylvania to standard of care and diagnosis 3) To facilitate the translation of new therapeutic interventions from the bench to the bedside.

Recruitment Criteria

Accepts Healthy Volunteers

Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms

No
Study Type

An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes.


An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes.


Searching Both is inclusive of interventional and observational studies.

Observational [Patient Registry]
Eligible Ages 18 Years and Over
Gender All
More Inclusion & Exclusion Criteria

Inclusion Criteria:

- IPF diagnosis - Sufficient testing results completed for an IPF Diagnosis (screening script) - Adults (age > 18 years old) - Participants who read and comprehend English language

Exclusion Criteria:

- Children - Prisoner-patients

Trial Details

Trial ID:

This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.

NCT00540475
Phase

Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans.

Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data.

Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.

Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.

Lead Sponsor

The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.

University of Pittsburgh
Principal Investigator

The person who is responsible for the scientific and technical direction of the entire clinical study.

Kevin F Gibson, MD
Principal Investigator Affiliation Medical Director, Dorothy P. & Richard P. Simmons Center
Agency Class

Category of organization(s) involved as sponsor (and collaborator) supporting the trial.

Other
Overall Status Recruiting
Countries United States
Conditions

The disease, disorder, syndrome, illness, or injury that is being studied.

Idiopathic Pulmonary Fibrosis
Study Website: View Trial Website
Additional Details

The University of Pittsburgh Medical Center, Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease is the coordination center for the Pennsylvania Idiopathic Pulmonary Fibrosis Statewide Research Registry, the collaborative institutions include: the University of Pennsylvania Health System, Geisinger Health System, and Penn State Milton S. Hershey Medical Center. The PA-IPF Registry developed into a web site that contains information for patients, health professionals, and families, as well as an Internet-based database that will store information about patients to provide them with guidance about care, research, and support groups close to the area in which they live. Benefits for membership in the PA-IPF Registry include:

  • - Staying informed about IPF research news, both nationally and locally.
  • - Having advance notice of any IPF research in which patients may be eligible to participate.

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.

Milton S. Hershey Medical Center, Hershey, Pennsylvania

Status

Recruiting

Address

Milton S. Hershey Medical Center

Hershey, Pennsylvania, 17033

Site Contact

Anne Dimmock, B.A.

adimmock@hmc.psu.edu

717-531-2925

University of Pennsylvania Health System, Philadelphia, Pennsylvania

Status

Recruiting

Address

University of Pennsylvania Health System

Philadelphia, Pennsylvania, 19104

Site Contact

Victoria Fleck

fleckv@uphs.upenn.edu

215-662-3115

Temple University, Philadelphia, Pennsylvania

Status

Recruiting

Address

Temple University

Philadelphia, Pennsylvania, 19140

Site Contact

Gayle Jones, RN

gayle.jones@tuhs.temple.edu

215-707-1359

Pittsburgh, Pennsylvania

Status

Recruiting

Address

Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease

Pittsburgh, Pennsylvania, 15213

Site Contact

Melinda J Klesen, B.A.

klesenmj@upmc.edu

866-922-4473

Wilkes-Barre, Pennsylvania

Status

Recruiting

Address

The Center for Health Research at Giesinger Health System

Wilkes-Barre, Pennsylvania, 18711

Site Contact

Rebecca Search, MPH

rasearch@geisinger.edu

570-214-9940