Research Room

Patient in research room

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

Overview

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 International PH Conference in Stone Mountain, Ga. That first gathering brought together almost 70 patients. At the 2014 PHA International PH Conference in Indianapolis, Ind., PHA hosted 10 research teams from all over the U.S., with 314 attendees participating in the Research Room. Research studies included in the 2014 Conference included studies focusing on:

  • Identifying biomarkers associated with positive treatment response and/or disease progression
  • Genetic markers in PH
  • Treatment effect of certain genetic mutations
  • Effect of a structured daily activity program
  • Identifying early life risk factors among adults with PH
  • Focus groups and questionnaires looking at the burden of PH on patients' quality of life.

Research Room Hours

The 2016 Research Room will take place during the Conference hours from June 17-19, 2016, in Dallas, Texas. Exact times are subject to change.

  • Fri., June 17: 8:00am - 5:00pm
  • Sat., June 18: 8:00am - 6:00pm
  • Sun., June 19: 8:00am - 10:00am

Research Room Location

  • Dallas Omni Hotel: Fairpark 1 Room

 How to Participate

  1. Complete the 2016 Universal Data Collection Form (web form). This form can be submitted electronically through this secure weblink to expedite your Research Room Check-In, or completed on-site at Conference 2016. 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 2016 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 2016 Research Room. The Research Room is located in Fairpark 1 of the Dallas Omni Hotel. 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 2016 PHA Research Room and thanking you for bringing us one step closer to a cure!

Research Projects Approved for Participation at the 2016 PHA Research Room

The following projects have been approved for participation in the 2016 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: Genetic Markers in Pulmonary Hypertension
  • Principal Investigator: Micheala Aldred, PhD
  • Institution: Cleveland Clinic, Genomic Medicine Institute
  • Who Is Eligible: Anyone with any type of PH, their unaffected relatives, and unrelated controls are eligible. 
  • Description:
    • We have identified that some patients with pulmonary hypertension may have a higher level of genetic changes in their blood cells than controls. The goal of this study is to understand why this happens, and if it is a consistent finding across different types of PH.
    • Anyone with pulmonary hypertension is eligible to participate, along with their unaffected relatives and also unrelated health controls. 
    • We are especially interested to enroll people who have PH-associated with a congenital heart defect, connective tissue disease, hereditary hemorrhagic telangiectasia, or non-Group 1 PH (such as CTEPH).
  • Study Name: “Exploring racial differences in quality of life of pulmonary arterial hypertension patients”
  • Principal Investigator: Nadine Al-Naamani, MD
  • Institution: Tufts University Medical Center
  • Who Is Eligible: Adult patients (18 years of age or older) who have been diagnosed with pulmonary hypertension
  • Description:
    • This research study is being completed to understand whether there are differences between pulmonary hypertension patients of different racial backgrounds in breathlessness and energy levels; in mood and overall well-being; and in symptoms and quality of life.
  • Study Name: “Heritability in chronic thromboembolic pulmonary hypertension (CTEPH)”
  • Principal Investigator: C. Gregory Elliott, MD
  • Institution: Intermountain Medical Center
  • Who Is Eligible: Patients with a diagnosis of WHO Group 4 PH (CTEPH), or family member of a patient diagnosed with WHO Group 4 PH (CTEPH)
  • Description:
    • Little is known about whether genetic (or inherited) factors contribute to the risk for CTEPH, but it is likely that they do since risk for venous thromboembolism is highly dependent on inherited factors, and venous thromboembolism is a major risk factor for CTEPH
    • To test whether inherited factors are important in CTEPH, we are conducting detailed family histories with CTEPH patients, with a particular emphasis on a family history of CTEPH, pulmonary hypertension of other cause, or venous thromboembolism (including pulmonary embolism and deep venous thrombosis).
    • We are also collecting DNA samples from CTEPH patients and their family members to test for genetic mutations that might cause CTEPH.
  • Study Name: “Assessing the Need for a Multiple Pathway Modulating Therapy for Pulmonary Hypertension Treatment”
  • Principal Investigator: Vivek Gupta, PhD
  • Institution: Keck Graduate Institute School of Pharmacy
  • Who Is Eligible: Patients diagnosed with pulmonary hypertension are eligible to participate
  • Description:
    • This study includes a survey for patients and clinicians designed to appraise the value of a new therapy capable of eliminating the need of combination therapy for PH treatment
    • Collected data will be anonymous and will be analysed to determine the effectiveness of a new therapy for PH
    • The new therapy could result in better patient outcomes, less costs associated with treatment and hospitalization, and better patient outcomes.
  • Study Name: “Biomarkers, chipcytometry, and targeted disease-related gene sequencing in PAH”
  • Principal Investigator: Georg Hansmann, MD, PhD
  • Institution: Hannover Medical School
  • Who Is Eligible:
    • Patients with idiopathic PAH, familial PAH, PAH-associated with connective tissues disease, PAH-associated with congenital heart disease, or chronic thromboembolic pulmonary hypertension (CTEPH)
    • Female family members of patients with PAH or CTEPH
  • Who is Not Eligible:
    • Patients and family members with obstructive sleep apnea (OSA), WHO Group 2 PH (PH due to left heart disease), and WHO Group 3 PH (PH due to chronic lung disease or hypoxemia)
  • Description:
    • Discovery of new severity and prognosis related biomarkers (proteins, ribonucleic acids, markers of metabolism)
    • Characterization and quantification of disease related progenitor cells and cell that are known to be associated with inflammation in the body, using an innovation from Germany, called Chip cytometry
    • Study of disease related alterations in the genes (mutations), using a targeted approach (targeted genes sequencing on patient DNA samples).
  • Study Name: “National Biological Sample and Data Repository for PAH”
  • Principal Investigator: William Nichols, PhD
  • Institution: Cincinnati Children’s Hospital Medical Center
  • Who Is Eligible:
    • Patients with WHO Group 1 PH (pulmonary arterial hypertension, PAH) 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: “Impact of anticoagulation on pulmonary arterial hypertension outcomes”
  • Principal Investigator: Kishan Parikh, MD
  • Institution: Duke Clinical Research Institute
  • Who Is Eligible:
    • Patients with WHO Group 1 PH (pulmonary arterial hypertension, PAH)
  • Description:
    • People with blood clots, abnormal heart rhythms, and other conditions (including pulmonary arterial hypertension) are frequently prescribed blood thinning medications. However, whether or not blood thinners effectively treat pulmonary arterial hypertension is still unclear.
    • In addition to the traditionally used blood thinning medication warfarin (Coumadin), newer medications exist that do not require monitoring and may be as effective in preventing blood clots. However this is not yet studied in pulmonary arterial hypertension.
    • We need your input in the form of an informal, one-on-one conversation with the goals of: a) partnering to design a study focused on outcomes important to you; 2) learning about your experience with blood thinners; and 3) sharing knowledge that we currently have about blood thinners for treating pulmonary arterial hypertension. 
  • Study Name: “A Natural History Study of Novel Biomarkers in Pulmonary Arterial Hypertension (PAH)”
  • Principal Investigator: Michael A. Solomon, MD
  • Institution: National Institutes of Health
  • Who Is Eligible:
    • Patients with WHO Group 1 PH (Pulmonary arterial hypertension, PAH)
    • Age 18 or older
    • Ability to provide informed, written consent
  • Description:
    • Determine if changes in blood inflammatory proteins over time are clinically useful in PAH and/or are associated with right ventricular function as assessed by cardiac MRI.
    • Examine circulating immune cell gene expression differences in PAH patients that may improve diagnostic testing or clinical monitoring.
  • Study Name: “A Pilot Study of the Effect of Spironolactone Therapy on Exercise Capacity and Endothelial Dysfunction in Pulmonary Arterial Hypertension (PAH)”
  • Principal Investigator: Michael A. Solomon, MD
  • Institution: National Institutes of Health
  • Who Is Eligible:
    • WHO Group 1 PH (PAH), except those with cirrhosis and portal hypertension or with active infection
    • Age 18 or older
    • Ability to provide informed, written consent
    • An estimated GFR of at least 35 mL/min/1.73m2 of BSA
    • Baseline serum potassium of 5 mEq/L or less
    • On stable PAH medical therapy for at least 4 weeks
    • Not currently taking spironolactone or eplerenone for at least 30 days
    • No evidence of acute right heart failure
    • No concurrent use of medications known to elevate serum potassium
    • Not pregnant
  • Description:
    • To determine whether or not spironolactone is a beneficial therapy in PAH
    • To evaluate if spironolactone therapy in PAH has an effect on vascular inflammation
    • To discover if spironolactone therapy in PAH changes blood immune cell gene expression
  • Study Name: “Patient perspective in living with manifestations of PAH”
  • Principal Investigator: Todd Tartavoulle, MD
  • Institution: LSU Health Sciences Center
  • Who Is Eligible:
    • Patients with WHO Group 1 PH (pulmonary arterial hypertension, PAH)
    • Ages 18 and over
  • Description:
    • Create a health related quality of life tool and validate at the PHA conference. We want to make sure these concepts are important to patients with PAH and that the questions address the concepts.
  • Study Name: “Sexual function and quality of life in PAH”
  • Principal Investigator: Corey Ventetuolo, MD
  • Institution: Brown University
  • Who Is Eligible:
    • Patients
      • Age >18 years old
      • Diagnosis of PAH requiring therapy (oral, inhaled, continuous infusion)
      • No patient-reported history of COPD, emphysema, pulmonary fibrosis, or sleep anpea
    • Volunteers
      • Sexual partners of PAH patients
  • Description:
    • We are hoping to learn more about how PAH affects our patients’ quality of life, specifically as it relates to sexual function and well-being. We plan to conduct in depth interviews of people with PAH about their experience with sex before, during and after diagnosis and treatment.
    • We will also ask patients with PAH to fill out 4 surveys about sexual function as well as general health related quality of life.
    • You may choose to complete either in the interview (approximately 90 minutes of your time, in a private room) or the surveys (approximately 35 minutes of your time, on a tablet computer) or both.
  • Study Name: Biomarkers of dysregulated BMP/TGF-beta signaling in PAH
  • Principal Investigator: Paul Yu, MD, PhD
  • Institution: Brigham and Women's Hospital
  • Who is Eligible: Known diagnosis of PAH and no contraindication for phlebotomy
  • Description: 
    • Dysregulated BMP/Endoglin/ALK1 signaling is a hallmark of specific subsets of Group 1 PH.

 

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



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

Diamond:

Actelion Bayer Gilead

Platinum:

 

Gold:

 

Silver:

Accredo Specialty Pharmacy Reata Pharmaceuticals United Therapeutics logo

Bronze:

SteadyMed Therapeutics

General:

Bellerophon Therapeutics Eiger BioPharmaceuticals


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


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