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.
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.
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.
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
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.