Frequently Asked Questions

• Established in 2016, the Patient Registry, collects clinical and medical data from up to 2,000 patients and is administered at participating PFF Care Centers across the United States.

• Individuals cannot enroll on their own. Participating PFF Care Centers identify appropriate participants based on the Patient Registry’s inclusion criteria.  Then a member of the Care Center informs the prospective participant, who then can agree and complete an informed consent. The Care Center member then enrolls the individual into the Patient Registry. Enrollment is capped at 2,000 participants. 

• The PFF Patient Registry collects demographic data, clinical information, patient-reported outcomes surveys, high-resolution computer tomography (HRCT) scans, and an optional blood sample from patients who have consented to participation. Blood samples are part of the Patient Registry biorepository. Clinical information includes medical history, medication, medical events, and test measurements including Diffusing capacity of the Lungs for carbon monoxide (DLCO) and Forced Vital Capacity (FVC).

• Researchers use the blood samples to study diagnostic and predictive biomarkers. Blood samples include DNA, RNA, serum, and plasma. Information that can directly identify you is removed before it’s shared with researchers. The information is always de-identified, which means that researchers who use it can never learn whose medical data it is.

• PFF Registry participants may choose to contribute a blood sample to be stored for future research. This blood is divided into plasma, serum, RNA, and DNA, stored in a central lab, and provided to researchers along with key data to study biomarkers of PF, genetic and genomic influences on the disease, and to guide precision medicine studies. When combined with the information in the PFF Patient Registry, these samples are helping scientists find new causes of PF and ILD, track the effects of PF and ILD treatments, improve the ways doctors diagnose and manage people living with PF and ILD, and help discover new treatments. Information that can directly identify you is removed before it’s shared with researchers.

• HRCT, or high-resolution computed tomography, is a special type of x-ray scanner that takes very detailed pictures inside the body. These scans are commonly used to diagnose and track progression of PF.

• DLCO, or the diffusing capacity of the lungs for carbon monoxide, is one of the most clinically important tests of lung function.  DLCO measures the ability of the lungs to transfer gas (like oxygen) to the red blood cells.

• FVC, or Forced Vital Capacity, measures how much air you can exhale from your lungs during a test called a spirometry test.  These tests are used extensively to track the lung function of patients and changes in this measure are key measures in PF research.

• Yes, we encourage you to join the Community Registry as well. Current participants in the Patient Registry are not automatically added to the Community Registry. Please join the Community Registry here.

• If you agree to take part in the PFF Community Registry, you will be asked to log in from your personal computer or mobile device onto a secure web portal every six months and complete a set of surveys.
• You do not have to answer all the questionnaires in one sitting. You can save your work and return to complete the questionnaires at a later time.
• PFF will share research updates via the PFF Registry newsletter

• If you are a person with PF or ILD, or if you received a lung transplant due to PF or ILD, the PFF Community Registry surveys will ask questions about your health history, treatments you may be taking, symptoms experienced, and your lifestyle.
• If you are a caregiver of a person with PF or ILD, the PFF Community Registry surveys will ask about the health history of the person you care for, treatments they may be taking, symptoms experienced, and their lifestyle.
• If you are a family member of a person with PF or ILD, the PFF Community Registry surveys will ask about the member of your family that has been diagnosed with PF or ILD.

• We estimate that it will take 45 – 60 minutes or less to complete each survey. If you complete surveys every six months, your time commitment would be approximately 2 hours or less every year.

• REDCap Cloud (https://www.redcapcloud.com/) is a secure, electronic data collection tool that supports research that requires compliance with regulatory agencies, commercial security standards, and data privacy laws.
• To participate in the PFF Community Registry, you will create your own myREDCap Cloud account free of charge. myREDCap Cloud allows participants to enter their information via a secure, HIPAA-compliant, online portal. Participants can remotely enroll and participate in clinical research by way of a single point of access over a computer or mobile device web browser.

o   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. You will not be offered or receive any medical services or medical advice due to participating in the PFF Community Registry. This is not a clinical trial. Participating in the PFF Community Registry, or not participating, will have no effect on the condition of treatment for you, the person for whom you provide care, or your family member.

• At this time, the PFF Community Registry is funded to collect data for three years, but that may be extended. We will ask you to complete a set of surveys every six months, as long as the PFF Community Registry is running. You may stop participating at any time without penalty.

• You will receive an email when it is time to complete your next survey. The PFF Community Registry will send reminder emails asking you to complete a survey every 6 months.

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

• Yes. You can seek assistance from a family member, friend, or other individual to complete the surveys, as long as the answers provided are your own.

• There are no specific plans at this time to share information back with participants regarding insights generated from this research. However, the PFF posts updates on research activities coming from the PFF Community Registry, including publications, on their website. If you are enrolled in the PFF Community Registry, you will receive updates directly from the PFF in emails and newsletters.
• You will be notified in a timely way if important new findings become known that may affect your willingness to continue in the study.

• Please respond with the answer that best represents you, even if the answer does not perfectly match. Some of the questionnaires included in the PFF Community Registry come from scientifically validated measures, which would no longer be validated if we alter the question and/or answer options.

• You may withdraw from the PFF Community Registry at any time. You do this by sending written notice to the PFF’s email or mailing address:

Email: registry@pulmonaryfibrosis.org
Mailing Address:
Pulmonary Fibrosis Foundation
230 East Ohio Street, Suite 500,
Chicago, Illinois 60611

• If your contact information has changed, you will be able to let us know on the “Contact Information Update” form the next time you complete a set of surveys.

• You can leave the study at any time without penalty. You do this by sending written notice to the PFF’s email or mailing address:

Email:registry@pulmonaryfibrosis.org
Mailing Address:   
Pulmonary Fibrosis Foundation
230 East Ohio Street, Suite 500,
Chicago, Illinois 60611

• Your participation in this study may be stopped without your consent at any time and for any reason by the sponsor or regulatory authorities. Reasons you may be withdrawn from the study include: it is determined to be in your best interest, you do not follow the study instructions, the study is stopped, or for other administrative reasons.

• You may need to check your spam folder or unblock no-reply@redcapcloud.com.

• You can access the PFF Community Registry by first logging into your myREDCap Cloud account here.
• Please note that your username is the valid email address you used to create your myREDCap Cloud account.
• If you have forgotten your password, you can reset your password by going to the following link. You will need to provide your username and click the “send reset link” button. An email with steps to create a new password will be sent to your valid email address. Please note you may need to check your spam folder or unblock no-reply@redcapcloud.com.

• We recommend that you complete surveys on a desktop or laptop computer for the best experience. You can log into myREDCap Cloud from your mobile device’s web browser, but the surveys may not be displayed perfectly on smaller screens.

• When you log into the PFF Community Registry’s list of forms page, forms you have already responded to will be identified as “Completed” in green text.
• Forms that you have not responded to will be identified as “Not Started” in orange text.
• Forms that you have started but left using the “Save and Return Later” will be identified as “Data Entry Started” in orange text. Be sure to return to these partially completed forms, respond to all questions, then click the “Submit” button.

• After you have completed a form by clicking the “Submit” button at the very bottom, your answers cannot be changed. Forms identified as “Completed” in green text cannot be edited.
• If you are uncertain about a question and need more time to get the correct information, you may click the “Save and Return Later” button. This button allows all of your responses to be saved and for you to return to the form as needed to provide more information or change responses you previously provided.

• If you have any questions or requests for information relating to the PFF Community Registry or your participation in it, or if you want to voice a complaint or concern about this research, you may contact the PFF by:
  • Phone at 844-825-5733 (844.TalkPFF), Monday – Friday, 9 AM – 5 PM Central Time
  • Email at registry@pulmonaryfibrosis.org.
• If you have any questions about your rights as a research participant or complaints regarding this research study, or you are unable to reach the research staff, you may contact a person independent of the research team at the Biomedical Research Alliance of New York Institutional Review Board at 516-318-6877. Questions, concerns, or complaints about research can also be registered with the Biomedical Research Alliance of New York Institutional Review Board at www.branyirb.com/concerns-about-research.