This invitation is for people with pulmonary arterial hypertension (PAH), or their caregivers or relatives, who have already participated in the NIHR BioResource Rare Diseases study or the National Cohort Study of Idiopathic and Heritable PAH.
We would like to invite you to be a part of a national research study on genetic research in PAH. We know your time is valuable, but we believe your input is crucial to help us better understand what patients and caregivers expect from genetic studies.
If you’re eligible and interested, we’d love for you to participate in a friendly one-off interview (either by phone or online) with our researcher, Dr Michaela Fay. She’ll ask you some questions about your experiences with feeding back the research findings, communication with the research team, and your willingness to participate in similar studies in the future. We promise it won’t take more than an hour of your time.
To be eligible, you must be a patient with PAH, a caregiver of a patient with PAH, or a relative (affected or unaffected) of a patient with PAH, and have participated in the NIHR BioResource Rare Diseases study or the National Cohort Study of Idiopathic and Heritable PAH.
If you have any further questions, don’t hesitate to email us at es740@cam.ac.uk.
Thank you so much for considering this invitation! We truly appreciate your willingness to help us improve our understanding of genetic research in PAH.
Yours sincerely
Dr Emilia Swietlik, PhD
BHF CRE Career Development Fellow
Internal Medicine and Chest Physician
University of Cambridge
Heart and Lung Research Institute