ATS Patient Information Series
Questions to ask your doctor
Before participating in a clinical research study or trial, make sure you know as much as possible about the study. The Pulmonary Hypertension Association (PHA) provides a list of questions to discuss with your pulmonary hypertension care team to help you decide whether the clinical trial is right for you.How Clinical Trials Work
Clinical trial sponsors are responsible for managing and financing the clinical trial, but not in conducting the research. A clinical trial sponsor can be an individual, an institution, a company or a government agency. The Pulmonary Hypertension Association provides an overview of how Clinical Trials work.Steps of a Clinical Trial
The concept for a clinical trial can be confusing to understand. The Pulmonary Hypertension Association (PHA) breaks down the steps of a clinical from research to testing and the processes in between. This resource reviews how potential new treatment moves through a series of steps or phases of clinical trials to gain more knowledge about the safety and effectiveness of the therapy.Podcast Episode
Interview with Dr. Velma Mockett, an Alberta-based mental health practitioner and licensed psychotherapist with more than 15 years of experience in the field. Dr. Mockett counsels patients on the grief and loss associated with chronic illness and uses her own experience with vasculitis to inform her work. In this episode she discusses mental health grounding techniques, the patient experience, and destigmatizing emotion.
Clinical Trials: What Is Clinical Research?
Clinical research is scientific research that involves people and is at the heart of all medical advances. Volunteering to participate in clinical research helps scientists and clinicians learn more about the science behind a disease, new therapies, and how to improve care. The Pulmonary Hypertension Association (PHA) shares how clinical research is important for new treatment for PH.Learn About the PH Drug Discovery and Clinical Trial Process
New videos are available from the Pulmonary Hypertension Association (about the process of developing safe, effective pulmonary hypertension treatments. The videos are designed to help viewers understand the process to bring new treatments to consumers.Debunking Myths and Misconceptions About Clinical Trial Participation
Rachel Damico, MD, PhD, addresses common concerns about clinical trial participation and the risks and benefits of participating in clinical research.
Pulmonary Fibrosis Foundation
Pulmonary Fibrosis Foundation (PFF) provides educational materials to members of the pulmonary fibrosis (PF) community and is committed to providing disease education to the PF community, free of charge. PFF’s educational materials are below. Please contact the PFF Help Center at 844.TalkPFF (844.825.5733) or help@pulmonaryfibrosis.org to order free hard copies of any of the printable material.
Clinical Trial Guide
Clinical trials for PF treatment are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. The PFF provides an overview of potential trial participation opportunities and what to consider before participating in a clinical trial.
Clinical Trial Finder
The PFF Clinical Trial Finder is a comprehensive list of clinical trials for PF-related conditions. You can use this tool to search for trials by specific features, such as the location, study type, and phase of trial. When using this tool, trial navigators are available to help you find trials that match your diagnosis and treatment history. You can speak with a trial navigator by calling (866) 914-7346.
Drug Development Pipeline for PF and IPF
You can learn about the latest in drug development for PF-related conditions using the PF Drug Development Pipeline. Use the filters on the left-hand side to narrow results by study phase, intervention type, condition, and more.
Clinical Trial Educational Center
The Clinical Trial Educational Center webpage provides an overview of all available Clinical Trial resources provided by the PFF. In addition to the materials described above, you can review a chart describing the different phases of clinical trials and a list of frequently asked questions.
| Pulmonary Hypertention Foundation | Pulmonary Fiborsis Foundation |
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| The Pulmonary Hypertension Association (PHA) educates pulmonary hypertension (PH) patients and caregivers about clinical trials and the importance of participation by providing educational videos, fact sheets and research updates through the PHA Classroom. | PFF is funding promising research. One of PFF’s key research programs is the PFF Community Registry. Eligible participants are invited to join by completing a series of simple surveys. Your survey responses will be used by researchers to better understand how PF and ILD progress over time, respond to treatments, and how the diseases affect individuals. The more people who join and provide responses, the closer we come to a cure. Eligible participants include:
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| PHA is committed to advancing PH research and drug development towards a cure by partnering with biotechnology and pharmaceutical companies in the PH drug discovery and development space to share information about clinical studies and research opportunities with the PHA community. | PFF Scholars: The PFF Scholars program focuses on engaging early-career investigators in their emerging research in the PF-field. With the goal of advancing research that could translate into successful therapies for PF, the PFF Scholars program is designed to support and enable promising researchers to obtain independent funding and continue their cutting- edge research. |
The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one’s personal health care provider.
