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Completed

NCT Number: NCT00540475

Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry

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.

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Key information

Conditions

Idiopathic Pulmonary Fibrosis Lung Diseases Lung Diseases, Interstitial Pulmonary Fibrosis Respiratory Tract Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Milton S. Hershey Medical Center, Hershey, Pennsylvania, United States

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About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. IPF Disease Course

    Time frame: 5 years

    Monitor IPF disease course

Sponsors and collaborators

Lead sponsor

University of Pittsburgh

Other

Collaborators

  • Geisinger Clinic
  • Milton S. Hershey Medical Center
  • Temple University
  • University of Pennsylvania

Registry information

Official study title

The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry

Acronym: PA-IPF

Important dates

Study start
2007
Primary completion
2018
Study completion
2018
First posted
Oct 8, 2007
Registry last updated
Oct 11, 2018

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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