Research Room

PHA's International PH Conference provides researchers access to the largest gathering of PH patients in the world.

PHA Research Room: A Participant's Perspective

Listen to Betty Lou Wojciechowski, PHA Board Member, share about her experience participating in a previous Research Room and what inspired her and her family to do so. This clip is from the recording, PHA Conference Research Room: Leaving Your Mark in the Future of PH, which provides a basic overview of previous Research Room successes and what a future participant might expect at PHA's 2014 Research Room.

Each biennial meeting of PHA's International PH Conference and Scientific Sessions includes a Research Room dedicated to helping researchers further their studies by allowing for the collection of data, including biological specimens (cheek swabs and blood samples) from PH patients. This event gives researchers the rare opportunity to collect data from the largest gathering of pulmonary hypertension patients in the world at any given time.

The first Research Room was held in 1994 at PHA's Conference in Stone Mountain, Ga. That first gathering brought together almost 70 patients. At PHA's 2012 Conference in Orlando, Fla., PHA hosted nine research teams from all over the U.S., with more than 230 attendees participating in the Research Room. Research projects approved in 2012 included:

  • A research study to identify which psychologic variables (depression, anxiety, stress) and physiologic variable (six-minute walk test) best predicts health-related quality of life in the adult pulmonary hypertension population;
  • Autoantibodies in PAH
  • Capture chip follow up study in PAH patients;
  • Genetic characterization of circulating CD33 & CD34 progenitor cells in PAH;
  • Genetics and genomics of PAH;
  • Prevalence of restless leg syndrome in patients with PH;
  • The role of angiogenic signaling molecules in PAH; and
  • Understanding the significance of blood-based markers for PH.

PHA's 2014 Conference taking place June 20-22, in Indianapolis, Ind., will follow in this tradition.

Research Room Hours

  • Friday, June 20: 7:00am-5:30pm
  • Saturday, June 21: 8:00am-6:00pm
  • Sunday, June 22: 8:00am-10:30am

Research Room Location

  • JW Marriott Room 201/202
 

How to Participate

  1. Complete the 2014 Universal Data Collection Form (web form). This form can be submitted electronically to expedite your Research Room Check-In, or completed on-site at Conference 2014. If you are not comfortable completing this form online you may download a copy (pdf), complete and return on-site when you check-into the Research Room.
  2. Review the Approved Projects Below. Description of the studies approved for participation at the 2014 Research Room are available below. Each study is looking for a specific type of participant, so review the "Who Is Eligible" section to see for which studies you might qualify. 
  3. Check-In to the 2014 Research Room. The Research Room is located in Room 201/202 of the JW Marriott (next to the exhibit hall). Go to the "Check-In Here" sign and a PHA staff member will greet you, ensure you have completed the Universal Data Collection Form, and answer any questions you might have about the process. PHA staff members will not be able to discuss individual studies with you. Each of the study teams will be available to answer any questions you might have before you decide whether or not to participate.
  4. Visit the Research Teams. You will be given a "Participant Passport" to guide you through your visits with the research teams. You do not have to visit all of the research teams, and you can visit them in any order. Each team will describe their project and the next steps for your participation. 
  5. "Stick It to PH." After your participation you will be given a sticker showing your involvement in the 2014 PHA Research Room and thanking you for bringing us one step closer to a cure!

Research Projects Approved for Participation at the 2014 PHA Research Room

The following projects have been approved for participation in the 2014 PHA Research Room. Each project is listed with a description of the project and who is eligible to participate. Projects will be added to this page as they are approved and a full list of participating investigators will be available on-site at the PHA Research Room. Please note that PHA staff cannot answer specific questions about the individual research projects. You will have an opportunity to meet with each of the investigative teams to have all of your questions answered before deciding whether or not to participate.

  • Study Name: "Biomarkers in Pulmonary Hypertension" - Gomberg-Maitland
  • Principal Investigator: Mardi Gomberg, MD
  • Institution: University of Chicago
  • Who Is Eligible: Patients who are currently taking prostacyclins and are over the age of 18
  • Description:
    • Search for genes in the blood which may determine the ultimate dose of given therapies
    • Study how genes affect this disease
    • Genetic information may help researchers identify ways to improve the effectiveness or safety of drugs for pulmonary hypertension
  • Study Name: "Biomarkers in Pulmonary Arterial Hypertension" - Yu
  • Principal Investigator: Paul Yu, MD
  • Institution: Brigham and Women's Hospital
  • Who Is Eligible:
    • Patients or healthy volunteers who are able to provide informed consent
    • Pediatric patients ages 10-17 who are able to provide consent via their parents or guardians
  • Description:
    • We have found abnormal levels of proteins related to bone morphogenetic protein (BMP) signaling in the blood of individuals with pulmonary arterial hypertension
    • We have asked whether these protein levels may predict whether an individual will be stable or progress in their disease, and whether they will respond to different types of treatment
    • We are testing whether these protein levels may be helpful as tests for pulmonary hypertension, or help make decisions about treatment
  • Study Name: "Genetic Markers in Pulmonary Hypertension" & "The BuMPer Study: Bone Morphogenetic Protein Pathway Mutations in Human Disease"
  • Principal Investigator: Micheala Aldred, PhD
  • Institution: Cleveland Clinic
  • Who Is Eligible: All patients, their unaffected relatives, and unrelated controls are eligible
  • Description:
    • o Understanding whether DNA damage plays a role in PH. We have identified that some patients may have a higher level of DNA damage in their blood cells than controls. In our preliminary studies we were able to reverse this effect by treating the cells with vitamin C. To validate these studies, we would like to collect blood from a larger number of patients with PH, their relatives and unrelated controls, to characterize how levels of DNA damage vary in the population and if it is related to specific types of PH. Any patient with PH is eligible to participate, along with their unaffected relatives and also unrelated health controls.
    • We are also testing the possibility that certain drugs may be able to correct the changes in cell communication that occur in PAH families who have mutations in the BMPR2 gene or other genes in the same pathway, such as ALK1 and endoglin. We have already published our first results and now we are trying to enroll additional families to determine how many mutations might respond to this approach. Anyone with familial PAH and/or HHT is eligible to participate.  We isolate endothelial cells - the specialized cells that line the blood vessels – from a blood sample and use these cells to study their response to different drugs.  Participation in this study requires a 40-50ml blood draw, so it is unlikely that we would be able to draw the blood during the PHA conference if you are also having blood drawn for other studies. However, it may be possible to enroll in the study at the conference and then have the blood drawn at a later time, using a kit that we can send you, so please come and talk to us if you are interested in this.
  • Study Name: "Clinical Investigation of a Daily Walking Program plus L-Arginine Supplementation for the Treatment of Pulmonary Arterial Hypertension"
  • Principal Inestigator: Mary Beth Brown, PT, PhD
  • Institution: Indiana University
  • Study Funding: Pulmonary Hypertension Association - American Thoracic Society
  • Who Is Eligible: Eligible subjects must be between the ages of 18-75 years, WHO Functional Class II-III, in a stable condition for the last 3 months (i.e., no change in treatment), and able to commute to the IUPUI campus 2 times per week for 12 weeks.
  • Study Description:
    • Recruited patients will be enrolled in a 12-week exercise program and take L-arginine supplements (an over-the-counter supplement) daily.
    • There will be 2 supervised treadmill sessions per week (45 minutes of walking) at the National Institute of Fitness and Sport (NIFS) on the IUPUI campus, plus patients will exercise independently in a home program of walking (45 minutes) 4 other days per week.
    • A 6-minute walk test, echocardiography, a blood draw from a forearm vein, and a cardio-pulmonary exercise test will be done at the initiation of the study and at the end of the 12-week period.
    • All subjects will be compensated for their time, plus will receive a free heart rate monitor and pedometer for participation.
  • Study Name: "Early Life Risk Factors Among Adults with Pulmonary Hypertension"
  • Principal Investigator: Robert S. Tepper, MD, PhD
  • Institution: Indiana University
  • Who Is Eligible:
    • Inclusion criteria: (1) diagnosis of adult onset pulmonary hypertension, including all WHO group classifications; & (2) age 18 to 60
    • Exclusion criteria: (1) age greater than 60; (2) onset of pulmonary hypertension before age 18; & (3) unwilling or unable to participate in survey
  • Description:
    • You are invited to participate in a research study of whether early life events, such as prematurity or major respiratory illnesses in childhood, may increase the risk of developing pulmonary hypertension in adulthood.
    • You will be asked to fill out a brief survey
  • Study Name: "Genetics and Genomics of Pulmonary Hypertension"
  • Principal Investigators: Eric Austin, MD
  • Institution: Vanderbilt University
  • Who Is Eligible:
    • We will enroll all PAH patients and their family members, as well as healthy subjects without relatives with PAH.
    • Exclusion criteria include any subjects not willing to consent to the release of their medical records from their primary physician for our records review and phenotype confirmation.
  • Description:
    • This study is part of an ongoing collaborative PAH study by investigators at Columbia and Vanderbilt Universities. Study goal: to identify novel genetic and genomic differences involved in the development of pulmonary arterial hypertension (PAH), and explain why some people develop PAH while others do not.
    • Request for medical information and blood for studies of subjects’ DNA and their circulating blood cells.
    • We will survey PAH patients about their attitudes and uptake of genetic testing for PAH
  • Study Name: "National Biologic Sample and Data Repository for PAH
  • Principal Investigator: William Nichols, PhD
  • Institution: Cincinnati Children's Hospital Medical Center
  • Who is Eligible: WHO Group 1 (PAH) patients or family members of patients
  • Description:
    • We are creating the world's largest collection of PAH patients' biological samples, clinical data and genetic data. Both adult and pediatric patients and their family members are being enrolled.
    • This resource, funded by the National Heart, Lung & Blood Institute of the NIH, is to provide the PAH research community with samples and information to research additional genetic factors, biomarkers, and pathways associated with the disease. Ideally, research with this collection of samples and data will allow for novel therapies for PAH.
    • The resource is officially known as the "National Biologic Sample and Data Repository for PAH." "PAH Biobank" is how we identify the project during day-to-day activities.
  • Study Name: "Patient Perspective in Pulmonary Hypertension"
  • Principal Investigator: Todd Tartavoulle, MN, RN, CNS
  • Institution: Louisiana State University Health Sciences Center
  • Who Is Eligible: Be diagnosed with PH per right heart catheterization
  • Description:
    • Understand patient's perspective of living with pulmonary hypertension specifically the relationship of depression, anxiety, stress, fatigue, and sexuality and the patient's well-being
  • Study Name: "The PROPAH (Patient Reported Outcomes in PAH) Functional Status Instrument"
  • Principal Investigator: Matthew Murawski, RPh, PhD
  • Institution: Purdue University
  • Who Is Eligible:
    • Inclusion criteria
      • Subjects aged 18 years or older who have documented PAH
      • WHO Functional Class II, III, or IV
      • Speak and read English
      • Have sufficient physical stamina to engage in these exercise for approximately 1/2 hour
    • Exclusion criteria
      • Patients with non-PAH pulmonary hypertension
      • Physical inability to complete the interview process
      • A physical or emotional state suggesting that participation might constitute a significant burden
      • Not fluent in written or spoken English
  • Description:
    • Doctors treating PAH patients have a need for a short, easy to complete questionnaire that patients can fill out at each appointment so the doctor can screen for changes in how you are doing from one appointment to the next.
    • We have done all we can do looking at what is in the PAH literature picking possible questions, but only people who actually live with PAH day to day to tell us which questions are actually the best indicators of what kind of day they are having.
    • If you chose to take part, we will hand you an I-Pad that will ask you to look at 70 questions, and for each question, you will need to tap the screen to tell us if:
      • if you've had that problem in the last year (if not, you automatically skip to the next question)
      • how often you have the problem, and
      • how bothersome the problem is for you when you have it.
    • We will use your answers to pick the best 25 to 30 questions to include in the final questionaire.

 

Revised on: May 30, 2014

Questions? Contact ResearchRoom@PHAssociation.org or 301-565-3004 x770.

 

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What Does Participation Mean?

Learn about previous Research Room success and what "participating" in the Research Room means in a webinar recording with PH researchers Eric Austin, MD; Micheala Aldred, PhD; C. Gregory Elliott, MD; and PHA Board of Trustees member Betty Lou Wojciechowski.

View the PHA Conference Research Room: Leaving Your Mark in the Future of PH recording today.

PHA thanks the sponsors of the International PH Conference and Scientific Sessions!

Diamond Sponsors: Actelion Bayer Gilead

Platinum Sponsor: United Therapeutics

Silver Sponsor: Lung Biotechnology

Bronze Sponsor: Accredo

General Sponsor: Reata Pharmacueticals CVS Caremark Specialty PharmacySteadyMed Therapeutics, Inc.Nora Thelma Bostrom Foundation

To support the International PH Conference and Scientific Sessions, please visit the sponsorship page.

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