Idiopathic Pulmonary FibrosisPA-IPFNCT00540475
Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry
An observational study of Idiopathic Pulmonary Fibrosis, run by University of Pittsburgh at 5 sites in United States.
Trial summary
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… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Idiopathic Pulmonary Fibrosis
- How many people
- 2,000 participants
- Where
- 5 sitesUnited States
- Study dates
- Sep 2007to Jul 2018
- How long will I take part?
- 5 Years
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF)
Who may be able to join
- IPF diagnosis
- Sufficient testing results completed for an IPF Diagnosis (screening script)
- Adults (age > 18 years old)
- Participants who read and comprehend English language
Who cannot join
- Children
- Prisoner-patients
Trial locations and contacts
5 sites in 1 country.
5 sites in 1 country
United States5 sites
Milton S. Hershey Medical Center
Hershey, Pennsylvania, 17033
University of Pennsylvania Health System
Philadelphia, Pennsylvania, 19104
Temple University
Philadelphia, Pennsylvania, 19140
Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease
Pittsburgh, Pennsylvania, 15213
The Center for Health Research at Giesinger Health System
Wilkes-Barre, Pennsylvania, 18711
About this study
Official title: The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide 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.
Read the detailed description
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.
- Conditions
- Idiopathic Pulmonary Fibrosis
- Keywords
- Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease
- Medical subject headings
- Idiopathic Pulmonary Fibrosis, Lung Diseases, Interstitial
What is being measured
The primary outcome is the main question the study is designed to answer.
IPF Disease Course
Monitor IPF disease course
Measured: 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted8 Oct 2007 (estimated)
- Study startSep 2007
- Primary completionJul 2018
- Study completionJul 2018
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Idiopathic Pulmonary FibrosisStudies of the same condition, open and under way.
- More trials run by University of PittsburghThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case-control
- Time perspective
- Prospective
- Enrolment
- 2,000 participants (actual)
- Target duration
- 5 Years
Sponsor and investigators
- Lead sponsor
- University of Pittsburgh
- Sponsor type
- University, hospital or other
- Collaborators
- Temple University, University of Pennsylvania, Geisinger Clinic, Milton S. Hershey Medical Center
- Responsible party
- Principal investigator, Kevin F. Gibson, University of Pittsburgh
- Investigators
- Kevin F Gibson, MD, Principal investigator, Medical Director, Dorothy P. & Richard P. Simmons Center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00540475
- Sponsor's protocol ID
- PRO07040328
- Acronym
- PA-IPF
- Status last verified
- Oct 2018
- First submitted
- 3 Oct 2007
- Last updated
- 11 Oct 2018
- Results posted
- No
- Data monitoring committee
- Yes
Study at a glance
From the registry record, last updated by the sponsor on 11 Oct 2018. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry
- ClinicalTrials.gov ID
- NCT00540475
- Acronym / sponsor ID
- PA-IPF / PRO07040328
- Conditions
- Idiopathic Pulmonary Fibrosis
- Keywords
- Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 2,000 participants (actual)
- Lead sponsor
- University of PittsburghUniversity, hospital or other
- Collaborators
- Temple University, University of Pennsylvania, Geisinger Clinic, Milton S. Hershey Medical Center
- Study start
- Sep 2007
- Primary completion
- Jul 2018 (actual)
- Study completion
- Jul 2018 (actual)
- First posted
- 8 Oct 2007 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
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.
Study design
- Observational model
- Case-control
- Time perspective
- Prospective
- Target follow-up
- 5 Years
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF)
Key inclusion criteria (4 listed)
- IPF diagnosis
- Sufficient testing results completed for an IPF Diagnosis (screening script)
- Adults (age > 18 years old)
- Participants who read and comprehend English language
Key exclusion criteria (2 listed)
- Children
- Prisoner-patients
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
IPF Disease Course
Time frame: 5 years
Monitor IPF disease course
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 11 Oct 2018.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Kevin F Gibson, MD principal investigator
Medical Director, Dorothy P. & Richard P. Simmons Center
5 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Idiopathic Pulmonary Fibrosis, run by University of Pittsburgh at 5 sites in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 11 Oct 2018. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 5 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
IPF Disease Course (time frame: 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 11 Oct 2018.