Friday, July 4, 2014

Please participate in Dr. Swigris' online oxygen research study at National Jewish

Dr. Jeff Swigris at National Jewish Health in Denver has received funding from the Patient Centered Outcomes Research Institute to run the Participation Program for Pulmonary Fibrosis. study the benefits of using oxygen for people with all kinds of pulmonary fibrosis. This is a free online research study that is easy to participate in from home. He is looking for people with pulmonary fibrosis and their caregivers who meet any of the following criteria:


  1. People with pulmonary fibrosis who are NOT using oxygen during the day
  2. People with pulmonary fibrosis who ARE using oxygen oxygen during the day
  3. Caregivers (usually family members) of people with pulmonary fibrosis

You can learn more here: http://pulmonaryfibrosisresearch.org/current-studies

Email Dr. Swigris' team to let them know you want to participate: support@pfresearch.org

7 comments :

  1. It is unclear to me how there is a choice about whether to use oxygen or not. If you need it, you need it. The benefits seem to be clear, the ability to carry on with one's life. Of course it might be more cost efficient to not provide oxygen for those that need it and simply let them expire, but hopefully we are not quite to that point yet. (I fear we are approaching it, from the attitudes that I see).

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  2. Hello Judy, the vast majority of studies concerning supplemental oxygen use involve COPD and other obstructive diseases. There is very little detailed information on how supplemental oxygen use helps the patient with a restrictive disease. We know we need it, the doctors know we need it, everybody knows we need it, but there is not much in the way of "scientific" study on our oxygen use. The more information the better. The better funding from the FDA, the better coverage by Medicare and the insurance industry, and a better knowledge base in the medical community.

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  3. If you haven't started oxygen therapy and would like to share your data so that oxygen therapy especially for those with PF can be improved, please contact Jeff's oxygen study group. They are urgently in need of people who HAVEN'T YET STARTED oxygen and there is no time like the present to contact them. To quote Jeff:

    "We'd like patients to contact us if they have PF and are not on oxygen, regardless of how severe it is...we'd rather follow them along and have them never go on oxygen, than miss the opportunity to include them and collect their data..."

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    Replies
    1. i have pf but i am not yet on oxygen. elykaren@ymail.com

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  4. what part does elevation (slc,ut 5000ft elevation) play? should i be thinking of moving?

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    1. Hi Karen,

      Living at altitude affects different people in different ways. Some folks with PF who live at altitude are sometimes advised by the physician to consider moving to a lower altitude. I suggest that you talk to your pulmonologist your question. It is a good one.

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  5. Newly diagnosed.12/15
    Waiting to see thoracic surgeon.
    Not on O2.
    Those around are asking why not.
    So far nothing is being done to improve my health.
    Life is changing rapidly. The furstration is beyond belief.
    I work in surgery. My co works are uneasy.
    The questions are mountings. I have no answers

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