National Jewish Health Is Looking For Participants In A New Pulmonary Fibrosis Study

The Participation Program for Pulmonary Fibrosis (P₃F) in association with National Jewish Health are looking for participants in a new study.

Study Title: Determining the effects of supplemental oxygen on outcomes meaningful to patients with pulmonary fibrosis

Why

Oxygen Tank Todd Huffman FLKR CC

Oxygen Tank — Todd Huffman — FLKR CC

The medical field knows very little about whether and how supplemental oxygen affects patients with PF and their loved ones.

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 the effects of supplemental oxygen on outcomes meaningful to patients with pulmonary fibrosis (PF)

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

The main objective of this study is to find out whether supplemental oxygen makes people with PF feel and function better. To do this, we need to know how PF patients feel and function before going on supplemental oxygen and then after going on supplemental oxygen.

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
    • And meets certain requirements based on prior breathing tests
  • 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
  1. If you use supplemental oxygen during the day (all the time or just with exertion), the extent of your participation will be one, 30-minute telephone interview and filling out a one-time quality of life questionnaire
  2. 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
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.  We will also collect data one month after you start oxygen and finally 9-12 months after you start oxygen.

Interested? Let us know!