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PI Biography
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CI Biography
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The PFF Registry team encourages study projects that progress to the development of a manuscript to submit for peer review. Please check the expected resulting products from your proposed projects:
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Please note: Data acquisition fees waived for proposals submitted by researchers in the PFF Care Center Network.
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The Registry Dashboard shows real-time view of the biorepository dashboard to track the biosample inventory and is updated monthly by SABER.
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Does this study involve collection of elements that are not part of existing case report forms from participants or patient medical records?* must provide value
No
Yes
High-Resolution Computed Tomography (HRCT) is a widely used technique to image various lung pathology. Does this study require the use of HRCT images? Please note: a Data Use Agreement (DUA) is required for raw HRCT images and the normal proposal review period of 6-8 weeks will take longer when these images are required.
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No, summary data would suffice.
Yes, I would like the raw HRCT images.
No, summary data would suffice.
Yes, I would like the raw HRCT images.
Does this study require the use of any of these biological samples?
Please note: There may be additional costs for shipping and handling samples.
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DNA
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What other biological samples are required?
SABER's Data Coordinating Center (DCC) for the PFF Registry provides support to aid in the development of study proposals, abstracts and manuscripts. Please check the level of support that you may need:* must provide value
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raw data
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Please select the raw data set you would like to request:
Registry 1.0 Community Registry Registry 1.0
Community Registry
Abstract* must provide value
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Background and Rationale
Please provide detailed background and rationale for your proposal, including whether this information is currently lacking and how the proposed study will address this gap. Also, acknowledge any limitations or concerns and how they will be addressed.* must provide value
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Specific Aims* must provide value
Methods - Study PopulationDescribe the sample of interest i.e.,(the entire PFFR cohort or certain subgroups).
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Methods - Data Fields (List ) Describe the data needed from the PFF Registry (including outcomes/events).
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Methods - Statistical AnalysisExplain how each study hypothesis or aim will be analyzed. Include any current hypotheses or information that might influence the approach to the analysis or the study question.
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Sample Size Calculations* must provide value
Literature References* must provide value
Optional
Plain Language SummaryAs the field of pulmonary fibrosis continues to grow, sometimes issues arise where patients desire additional perspectives based on the currently available educational materials. In a desire to meet these needs, we request a short summary to share with individuals who are not as familiar with these scientific terms and processes.
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Please describe any additional information:
Prior to being reviewed, the Principal Investigator must agree to the terms outlined in this document: Conditions of Proposal Acceptance If proposal is accepted the Principal Investigator must agree to these conditions prior to receiving access to the data. Acknowledgement: The Principal Investigator takes overall responsibility for the entire project for which the data is being requested. The Principal Investigator acknowledges and agrees that the Pulmonary Fibrosis Foundation (PFF) will not enter in a data use agreement with any participating site for request of data. The Principal Investigator is solely responsible for the necessary approvals. The Principal Investigator agrees to follow the PFF publication policy enlisted below. Data Use and PFF: Any use or reproduction of the data in a manuscript or within data analysis does not constitute or imply the endorsement, recommendation, or favoring of the work by Pulmonary Fibrosis Foundation or the PFF Registry. Document Development, Distribution, and Review Policy: The review process for peer-reviewed publication is identical to that for guidelines, whether a PFF-generated work product or from an outside agency for PFF evaluation and joint signature. If the document will appear in PFF-controlled pages, it only needs PFF Medical Team review and will not undergo journal peer review. Manuscript & Abstract | Publications: The PFF encourages rapid dissemination of new information generated by its investigators and relies on the intellectual integrity, communication transparency, scientific honesty, and goodwill of its Care Center Network members to ensure that the reporting process is appropriate. Contributions of individual investigators, especially new investigators, should be recognized, given the importance of authorship to academic promotion. All publications must include explicit recognition of patients, principal investigators, and others within the PFF Care Center Network. Abstracts and manuscripts must be reviewed by the PFF prior to submission or presentation. The PFF Medical Team and Scientific Review Committee may send comments and suggestions for consideration by the PI who reserves the final decision on the content of the abstract or manuscript. All manuscripts must be submitted for review by the PFF Medical Team and Scientific Review Committee at least eight weeks prior to planned submission for publication. Final manuscripts must be submitted to the PFF Medical Team and PFF Care Center Network & Registry Steering Committee in advance of journal submission for informational purposes only. All abstracts require review by the PFF Medical Team and Scientific Review Committee at least six weeks before planned submission for presentation. Other Research Manuscripts: Other research manuscripts are documents developed by any PFF workgroup or from a PFF Registry. Grant-funded manuscripts must include language acknowledging the PFF's receipt of the grant. Manuscripts of this nature should be submitted to the PFF Medical Team and PFF Registry Steering Committee in advance of journal submission for informational purposes only.
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