Research Regarding Pulmonary Fibrosis (PF)

I received the following in an e-mail from my favorite people at the Coalition for Pulmonary Fibrosis:

“If you are a Pulmonary Fibrosis patient and would like to help us find answers to PF, the Coalition for Pulmonary Fibrosis (CPF) urges you to consider being involved in clinical trials. No treatments or cures can be discovered without these trials.

One important trial is being conducted by the National Institutes of Health (NIH) and it is called "PANTHER". It is studying the use of steroids (prednisone) and N-Acetylcysteine (NAC) in PF. Please read below information regarding the importance of the trial in a message by Dr. Jesse Roman. There is a full listing of clinical trials on the CPF website at   http://www.coalitionforpf.org/cpf_research_clinical.php or on www.clinicaltrials.gov. 

Patients are closely monitored, no one is required to stay in a trial if they have any issues with the treatment and any patient who volunteers may find they have participated in a trial that produces a viable treatment!

The PANTHER-IPF: Prednisone, Azathioprine, and N-Acetylcysteine: A Study That Evaluates Response in IPF trial evaluates the effectiveness of N-acetyl cysteine (NAC) alone, and in combination with prednisone and azathioprine, at preventing the loss of lung function in people with IPF. This trial is available to all subjects with IPF diagnosed in the last 48 months between 35–85 years of age with moderate disease who meet study specific enrollment criteria.

Note from PANTHER research leaders and Dr. Jesse Roman:

The most important question in Pulmonary Fibrosis research remains unanswered:

“How Can PF Be Stopped?  Sadly, we don’t yet know the answer to this important question. New treatments are being investigated and meanwhile traditional therapies are used but still need to be proven.  Since Idiopathic Pulmonary Fibrosis (IPF) also referred to as PF, was first described several decades ago, physicians prescribed steroids (e.g., Prednisone) for its treatment. This practice continues even though their true effect in IPF remains unknown. Studies also suggest a role for a special kind of anti-oxidant called N-acetylcysteine or NAC. In fact, a well-known study suggests that the combination of Prednisone and NAC (with another drug called azathioprine) may be useful in patients with IPF. Today, however, data are not available from large, well-conducted studies testing the true effect of these drugs. 

It is imperative that IPF experts determine if these agents are beneficial.  Acknowledging the critical nature of this question, the National Institutes of Health is currently sponsoring a clinical trial called PANTHER-IPF, which is expected to answer the question once and for all. Conducted by the IPF Clinical Research Network (IPFnet), patients are being recruited to PANTHER-IPF in 26 centers around the U.S. The IPFnet successfully concluded two important IPF clinical trials in the past few years, and has taken on finding an answer to this question. Half of the patients needed in PANTHER-IPF have been recruited, but more are needed to complete this important trial.

Understandably, some patients worry about the side-effects of steroids. However, steroids are being used effectively for many medical conditions worldwide. Yet, we do not know if they work in IPF, nor have they been tested in combination with anti-oxidants in controlled trials as is in the case in PANTHER-IPF.  We eagerly encourage patients to participate in PANTHER-IPF.

By answering the question about steroids and combined therapies using it, PANTHER-IPF may prove to be one of the most important trials conducted to date in the area of IPF.  Regardless of the trial’s result, it will change medical practice – physicians will know with more certainty how to better manage patients with IPF.  

If you are interested in participating or referring a patient to this trial or simply need more information, please contact any of the IPFnet centers which are listed below and on www.ipfnet.org with links to their research sites." -

Source:  Dr. Jesse Roman and IPFNet”