IPAH research study

Call for more IPAH patients to take part in study

More patients with IPAH are needed to participate in important research into the causes and potential treatment of this condition.

The National Cohort Study of Idiopathic and Heritable Pulmonary Arterial Hypertension (PAH) is looking for more volunteer participants. More than 460 people diagnosed with IPAH have already signed up to the five year study.

They have consented to have the results of their routine tests and procedures added to a national database; plus give blood and urine samples and answer epidemiology questionnaires.

Research study co-ordinator Carmen Treacy said: “Volunteers play a vital part in contributing to this research study and we already have over 20,000 samples in our biorepository. We’d like to thank everyone who has participated so far and ask others to consider getting involved.”

The National Cohort study is funded by the British Heart Foundation, Medical Research Council and the National Institute of Health Research. PHA UK also supports the study and follows its progress with interest.

Around 1,000 people are diagnosed with IPAH in the UK. The study would like to involve as many of those patients as possible. It started in February 2014 and will run for at least five years – hopefully longer with further funding.

Carmen added: “The key objective of our study is to investigate the genetic causes of PAH; to learn more about the mechanisms of the disease and the effects of potential new treatments.

This study involves patients over the age of 16 years with idiopathic and heritable PAH in the UK. The study is also inviting relatives of patients to take part.

Taking part in the study does not involve any extra hospital visits of any kind. All clinical data is gathered as part of patient’s routine appointments at their local PAH centre.