Contact

P₃F Coordinating Center
c/o National Jewish Health
1400 Jackson St., F107
Denver, CO 80206
Toll-Free: 1.855.609.0010
Local: 303.398.1997 
Fax: 303.270.2240
support@pfresearch.org

 

Current Studies

Study Title: A Study of Symptoms and Activity in Pulmonary Fibrosis (PF)

Why

The medical field knows very little about how symptoms and activity levels change over time, or in response to supplemental oxygen use, in patients with PF.

The P₃F team (of patients, physicians, patient advocacy group representatives, PF support group leaders and others) wants to change this.

What

A real-world study of how symptoms and activity levels change in patients with pulmonary fibrosis (PF), from before to after daytime oxygen is initiated

By joining the P₃F team, you can help move the PF field forward by participating in this innovative research study!

  • No travel required – not even to your doctor’s office
  • Sign up is simple – just contact our study personnel to get started (click here for our contact information)
  • You do not need a computer to participate but it helps if you have access to one with internet capabilities
  • There is no cost to you or your insurance

Main objective

We aim to examine how PF patients who do not yet need supplemental oxygen during the day feel and function at enrollement. For patients who are prescribed supplemental oxygen by their provider during the duration of the study, we will collect data again immediately before they begin to use supplemental oxygen during the day, then one month later, and finally 9-12 months later.

Who is conducting the study?

The P₃F which includes investigators at National Jewish Health in Denver, Colorado are leading this research study.

Who can participate?

  • Anyone with PF
    • Regardless of cause
    • Aged 18-105 years
    • Who speaks English
  • Any 18-105 year-old English-speaking primary supporter of a PF patient (i.e. spouse, child, friend, etc.)
  • Any English-speaking physician who prescribes oxygen to a PF patient

What happens after I enroll?

  • You may be asked to participate in one or more parts of the study
  • Regardless of how you participate, you will be given a unique identifier, so we don’t have to use your name (or other private information) and can keep identifying information private
  • If you do not use supplemental oxygen at all during the day, we will collect data from you at four time-points

        a) At time of enrollment
        b) Immediately before oxygen is prescribed for use during the day                 (but only if your personal physician prescribes it - oxygen will NOT               be prescribed by study personnel)
        c) 1 month after oxygen is prescribed for use during the day
        d) 9-12 months later

What kinds of data are collected at the four time points (a, b, c and d)?

  • Four questionnaires that ask about symptoms and quality of life
  • You will be asked to wear an activity monitor on your arm for 7 days
  • You will be asked to wear a GPS monitor on your clothing for 7 days
  • The first 40 subjects who are interested will be interviewed for 30 minutes over the phone

How are the data collected?

  • Questionnaires can be filled out online, or paper versions can be mailed to you
  • The activity monitor and GPS unit are mailed to you
  • Interviews are conducted over the phone with study personnel

There is NO cost to you!

  • Telephone interviews are conducted via the P₃F toll-free phone line
  • All mailings are paid for by the study
  • Patients use pre-addressed, postage-paid envelopes to return equipment

How will you know if I my doctor wants me to start using oxygen during the day?

  • The short answer is we will stay in touch with you:
  • You will be asked to fill out a simple, 10-minute questionnaire once a month
  • You will let us know when you have appointments with your doctors
  • You will contact us if your doctor wants you to start using oxygen during the day
  • We will provide you with an informational packet to bring to your doctor visits to remind both you and your doctor about the requirements of the study

My doctor wants me to start using oxygen during the day. What now?

We are assuming the need for oxygen has come on gradually and not because something acute has occurred. If this is the case, then we will make sure your doctor is still okay with you waiting to start using supplemental oxygen until after we collect some data from you over the next 7-10 days. 

Interested? Let us know!

  • Email study personnel by completing the form below
  • Call study personnel toll free at 1.855.609.0010 or locally at 303.398.1997
  • Send a fax to study personnel at 303.270.2240