Monday, February 4, 2013

From Orlando to Istanbul…

At PHA’s 2012 International PH Conference and Scientific Sessions in Orlando, Fla., one of our medical speakers during the Scientific Sessions was Dr. Ghazwan Butrous, a Professor of Cardiopulmonary Sciences at the University of Kent in the United Kingdom. His presentation on schistosomiasis, an infection (caused by parasitic worms in contaminated water) that is a primary cause of pulmonary hypertension in South America, Asia and Africa, is now available on PHA Online University and is well worth watching.

We have known Dr. Butrous since, as a scientist at Pfizer, he played a critical role in demonstrating the value of sildenafil for treatment of pulmonary hypertension. Today, he plays another important role as Managing Director of the Pulmonary Vascular Research Institute (PVRI), an organization of physicians with whom PHA has been developing an increasing number of partnerships.

Grand Bazaar
There are many connections between PHA and PVRI, and at the end of 2012 I got a call from Drs. Stuart Rich and John Newman. Dr. Rich is a past member of PHA’s Scientific Leadership Council (SLC) and co-founder of PVRI, and Dr. Newman is immediate past chair of PHA’s SLC and active in PVRI. They invited me to attend PVRI’s annual meeting in Istanbul to address the group on what patients want from medical research and to discuss a potential clinical trials initiative.

When I heard the question – what do patients want from medical research, I was really pleased. Here were Dr. Rich and Dr. Newman, researchers who played important roles in building this field, asking a question we had rarely heard before.

Hagia Sophia
I accepted and began developed a survey. Once it was ready and posted online, Kim Lamon-Loperfido, who manages PHA’s Patient Outreach and Services, circulated a single Facebook message to let our community know it was available. Twelve hours later I checked to see if anyone was interested. To my astonishment, 143 people had already completed the survey … and within 72 hours we had met our goal of 250 respondents. This was no small statement of interest since we estimated completion would take 35 to 45 minutes. 

Michael Gray and Briana Rivas-Morello in our Medical Services program volunteered to analyze the data and developed a detailed report and slide deck which I was able to present on Tuesday, Jan. 22, in Istanbul to the almost 200 physicians and researchers from around the globe who attended.
Topkapi Palace
The presentation was part of a symposium on the possible development of a global clinical trials consortium. Besides my presentation from the perspective of patient advocacy groups, Drs. Rich and Newman chaired sessions that included perspectives from academia, industry and government.
PHA’s presentation was well received, and we have already received considerable interest in more information from many who attended. Our next step will be to share the information with PHA’s Scientific Leadership Council so that one or more researchers can be encouraged to expand and refine it for publication. At that point, we look forward to sharing the information with those who participated in the survey, the rest of our PH community and researchers in other fields who are finding this topic of growing interest.

One thing that is already crystal clear from the survey is that patients want more information than they are getting from the research in which they are participating – and those who are not participating could be encouraged to do so with more information.

Dr. Al- Hazmi bringing the
Sometimes It's PH Campaign
zebra stripes to Istanbul
At PHA we will begin working on this and, as our information is reviewed and further developed, you will be hearing more about it.

I cannot write this without saying that Istanbul – with its long and historic blending of East and West – was a perfect place to host this global meeting. The meeting was hosted by the Saudi Association for Pulmonary Hypertension and at an evening event, I pointed out to Dr. Manal Al-Hazmi from Riyadh, Saudi Arabia, that her blouse looked like zebra stripes. She replied, “Of course, that’s why I chose it … to support the early diagnosis campaign and bring awareness to Istanbul!”

There is no question that we are all in this fight together.


  1. What a fantastic thing you are all doing for us patients! It is, in my mind, one of the more important things patients can do for themselves is get active in their care and know more about this disease!!

    Thank you for all that you and PHA does for us! I'd love to see more pics if possible :-)

    1. Thanks for for the kind words...we do it together!

      I'll add a couple more pictures soon.

  2. In all the years I have been a member, I am constantly blown away by all the outreach and progress PHA is making towards a cure!! May God Bless you all!! I know together we can discover the many causes of Pulmonary Hypertension and make it a faint memory....


  3. Thank you! Some more good news today is that PVRI doctors will now participate in World PH Day on May 5

  4. Absolute wonderful work Rino. PH South Africa is so honored to follow your footsteps and that of PHA!!!

  5. Serious lover of your blog, a considerable number of your blog posts have really helped me out. Looking towards updates!

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