The Research Room at PHA's International PH Conference: What It Means for PH Research

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Any PH physician will tell you that one of the most common questions PH patients ask is, “What can I do to help find a cure?” At PHA's recent International PH Conference and Scientific Sessions in Orlando, Fla., we had a great answer for the PH community: participate in the PHA Research Room. The 2012 PHA Research Room featured nine superb research teams from institutions all over the country and continued a tradition that started at the first PHA International PH Conference in 1994 in Stone Mountain, Ga.

These teams studied subjects ranging from the genetics of PH to the psychosocial impact of living with PH, and many groups came to PHA's Conference for the very purpose of collecting important biological samples and information from the largest gathering of PH patients in the world. The 2012 Research Room hosted 235 participants, more than ever before, and very few of the researchers left Conference with unused supplies.

But what will happen with these samples? How will these samples progress our understanding of the disease? In order to fully understand the impact of participating in such an event, it is important to explain more about how samples and data are used by research groups.

In most cases, samples of blood must be processed immediately after being collected. Our researchers had centrifuges, freezers and dry ice available to them in the Research Room so that they could separate the blood into its constituent proteins, cells and metabolites, keep them viable for research, and ensure they would travel well back to each researcher’s facility. Some sensitive tests had to be performed on site as the blood cells or other components being measured would not survive storage or freezing. Depending on the research question, some research groups separated plasma or cells from blood into yet smaller fractions. For example, researchers studying PH genetics isolated DNA and RNA molecules from circulating blood cells, while researchers studying changes in metabolism with PH examined chemicals secreted into the blood or produced by circulating cells. Many of these analyses are done using sophisticated equipment which can analyze and acquire large quantities of genetic or chemical data from samples very rapidly, what researchers have called “highthroughput” sequencing or metabolomic technologies.

Several of the groups have returned to the PHA Research Room after participating several times in the past. For example, Dr. Michaela Aldred of the Cleveland Clinic was a return researcher. Her research studied circulating vessel stem cells called endothelial progenitor cells (EPCs) in the blood of individuals with PH. She returned this year to repeat measurements on patients whom she met in 2010, to see if the number or quality of EPCs in the circulation change over time in this disease.

Analyzing all of this material and then looking for trends and conclusions among the entire sample can take a great deal of time. Some of the research examining samples from 2006, 2008 and 2010 are still being analyzed and performed to this day. The rewards of this long-term effort can be worth the wait. In fact, in the short span of time that PHA has hosted this effort, important PH discoveries have already come to light. These discoveries include a vital contribution to the identification of mutations in BMPR2 reported by several groups in the year 2000, using DNA obtained from families enrolled at some of the earliest Research Room sessions.

Dr. Greg Elliott, one of the founders of the Research Room, comments, “At the first meeting, the Research Room gave patients a unique opportunity to join physicianscientists who sought to advance diagnosis and treatment of PH. Almost two decades later, the Research Room remains a Conference icon that continues to offer new generations of patients, families and physician-scientists opportunities to advance our understanding of PH.”

It is estimated that it would take the average specialty clinic in a busy metropolitan hospital four to five years to meet and study the same number of PH patients as the participating Conference Research Room groups were able to meet in a single weekend. The PHA Research Room thus represents an incredible opportunity to accelerate the pace of discovery in this disease.

The findings from this latest round of research are still being analyzed and discovered. Those of you who have taken time from a busy Conference to speak with the research teams and provide your health information and blood samples, or who have contributed or volunteered in other ways to assist the Research Room project, have helped to move PH research forward as part of this incredible and long-term team effort.

By Paul B. Yu, MD, Brigham and Women's Hospital, Cardiovascular Division, Boston, Mass.

This article first appeared in Pathlight Fall 2012.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: October 2012




PHA Researcher Spotlight

Dr. Yinzhong Zhang

In addition to his research, Dr. Zhang participates in PHA events, including PHA's 9th International PH Conference and Scientific Sessions in 2010. “I was deeply touched by the PH patients,” he says. “Their love of life drives me to work hard on my research, and I hope my results can really help them in the future.” 

Read Dr. Zhang's story


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.