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Required format:

qANz7u7MIikHW7K7gLTE9cFt

Ancillary Studies Submission Form

To submit an ancillary studies proposal that utilizes PFF Registry data, please complete this request form. Please utilize our Registry Protocol and Data Dictionary for additional references.

This form will allow 'Save & Return Later' option for respondents.

Please select your role on the proposal you are submitting:

* must provide value

What is your other role?

First Name

* must provide value

Last Name

* must provide value

Title

* must provide value

Institution/Company

* must provide value

Email Address

* must provide value

Phone Number

* must provide value

Affiliation

* must provide value

PFF Care Center Network

PFF Registry

PFF Scholar

Industry

Academic Center

Other

Biography

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Name

Title

Institution

Phone

PI Biography

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Name

Institution

Phone

CI Biography

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Name

Institution

Phone

OI 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:

* must provide value

Abstract

Poster

Manuscript

Please select the proposal type:

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New

Revised

Proposal Date:

D-M-Y

Revision Date

M-D-Y

Please describe your revisions:

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Title of Study:

Please note: As we move forward with our research endeavors, we would like to remind you of the importance of statistical support in ensuring the rigor and accuracy of our findings. To streamline this process, we kindly request that each investigator consider providing their own form of statistical support.
Alternatively, if you opt not to provide your own statistical expertise, please be prepared to allocate funding to cover the services of our dedicated Statistical Team within the Data Coordinating Center (DCC). This will enable us to maintain the highest standards in data analysis and interpretation. Upon completion of a feasibility assessment for your proposal, the DCC will provide a cost estimate to you for their statistical support services.
Your cooperation in this matter is greatly appreciated, and we look forward to achieving impactful and well-supported research outcomes together.
If you have any questions, please reach out to us at registry@pulmonaryfibrosis.org

Funding Source

* must provide value

Proposed Funding Start Date

* must provide value

D-M-Y

Proposed Funding End Date

* must provide value

D-M-Y

The Registry Dashboard shows real-time view of the biorepository dashboard to track the biosample inventory and is updated monthly by SABER.

Would you like a copy of the Registry Dashboard?

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

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.

Does this study require the use of any of these biological samples?

Please note: There may be additional costs for shipping and handling samples.

* must provide value

DNA

RNA

Plasma

Serum

Other

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:

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SABER Statistical Analysis/Support

Raw Data

Both

None, my organization will provide statistical support

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Name of Organization:

Please select the raw data set you would like to request:

Patient Registry

Community Registry

both

Abstract

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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.

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Specific Aims

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Methods - Study Population
Describe 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 Analysis
Explain 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

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Literature References

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Plain Language Summary

As 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.

* must provide value

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Please describe any additional information:

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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.

Statistical Support:

As part of our research collaboration, please note investigators are encouraged to provide their own statistical expertise for data analysis. In the event an investigator chooses not to provide statistical support, the investigator must provide funding to cover services provided by our Statistical Team within the Data Coordinating Center (DCC). Your cooperation ensures the integrity of our research outcomes.

Thank you for your understanding and commitment.

We agree to the conditions outlined above.

* must provide value

Yes

Electronic Signature

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Add signature

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