Frequently asked questions

The PFF Registry is led by the PFF medical team and staff with advisory support from the Registry Steering Committee, a group of experts and investigators from the PFF Care Centers and other industry partners. The daily operations are managed by the data coordinating center, Statistical Analysis of Biomedical Education and Research (SABER) at the University of Michigan. The SABER team develops and manages the Registry, work with Care Centers to ensure proper data completion, and partner with researchers to ensure that Registry data can support their proposed studies. Their support continues throughout the research process, up to and including preparing manuscripts for publication. For more information, click here.

The PFF Community Registry requests information on participant demographics, patient diagnosis, medical history, medications, caregiver relationship, caregiving activities, family history, and biological connection. The Community Registry also gathers participant-reported outcomes for patients and caregivers.

The primary goal of this research initiative is to address various issues in PF to improve diagnosis, care, and outcomes in the patients, caregivers and family members that are affected by it.

• To achieve this, the PFF has built a national, large-scale observational database of individuals with PF or ILD, lung transplant recipients who have had PF or ILD, as well as the caregivers and family members affected by PF or ILD to:
  • Collect information to better understand how PF and ILD affect the lives of people with PF, caregivers, and family members;
  • Build a base of PF community members willing to share their thoughts and participate in future research; and
  • Provide data to medical researchers who are working to improve the lives of everyone impacted by PF.

No. There is no cost to you to participate in the PFF Community Registry.

No. You will not receive any payment for taking part in the PFF Community Registry. Participation in the PFF Community Registry is completely voluntary.

No. The PFF Community Registry requires internet access and a personal computer or mobile device to participate.

You may join as many groups as you are eligible for, whether that be one, two, or all three.  For example, if you are a caregiver and have a biological family member with PF or ILD, you can join both the caregiver and family member groups.

If you are willing to be contacted about future research projects and indicate this on the informed consent form, you will receive emails about additional research opportunities from us or the researchers themselves.

If you are not eligible for additional research studies, you will not be contacted about them.

If you indicated on the informed consent form that you are not interested in being contacted about future research projects, you will not receive information about additional research.

Participants of the PFF Community Registry will receive emails about projects they may be eligible for if they express interest in additional research projects on the informed consent form. When we identify studies that we think you are eligible for, we will send you an email with information about the project. Participation in additional research is optional and does not affect participation in the PFF Community Registry.

If you are willing to be contacted about educational events or experiences and indicate this on the informed consent form, you will receive emails about upcoming events/experiences sponsored by the PFF, including educational webinars, support group meetings, and other events.

Information you report will be used for scientific analysis in attempts to better understand how PF or ILD progresses over time and responds to treatments, how the disease affects individuals with PF or ILD, caregivers, and family members.

Information you report will be used by the study sponsor and given to other researchers.Any data that directly identifies you will be removed before your information is shared with researchers.

The results of this research may be presented at meetings or in publications. However, you will not be identified in these presentations and/or publications.

The protection of your privacy is incredibly important to the PFF, and the researchers involved with the PFF Community Registry. For this reason, you will create a password protected account (myREDCap Cloud) so that only you can access, update, and respond to PFF Community Registry surveys.

To the extent allowed by law, every effort will be made to keep your personal information confidential. However, information from this study will be submitted to the study sponsor and their representatives. Other regulatory agencies, such as the Institutional Review Board, Biomedical Research Alliance of New York (BRANY), may review information provided to make sure the study is being conducted ethically. While these parties are aware of the need to keep your information confidential, total confidentiality cannot be guaranteed.

Identifiers might be removed from your identifiable private information. After such removal, the information may be used for future research studies or distributed to another investigator for future research studies without your additional informed consent (or consent from your legally authorized representative).

While every effort will be made to keep your information confidential, there is the risk of loss of confidentiality of your information collected for this study. To minimize this risk, participants will be asked to log into a web portal, using a user ID and password, before providing any information. The same regulations that govern how a doctor’s office stores your electronic health record are utilized in the PFF Community Registry. Additionally, the PFF Community Registry will operate under a Certificate of Confidentiality from the National Institutes of Health (NIH).

Federal regulations give you certain rights related to your health information. These include the right to know who will be able to get the information and why they may be able to get it. You will choose how much information to share with the PFF Community Registry by entering information directly into the web portal.