Recruitment of Relatives
If you have a family history of Pulmonary Arterial Hypertension (PAH), you may be eligible for this study.
We would like first degree relatives (mums, dads, siblings and children) of patients with Heritable PAH to participate in this research study.
Heritable PAH means either a genetic change has been identified as the cause for disease or that there is a family history of the disease.
Relatives aged 16 and over will be seen once per year by their local research team. You will be asked to complete some non-invasive tests including, exercise tests, lung function, heart imaging (echo) and to donate some blood (no more than 100mls in a 24 hour period). Relatives may choose to have a right heart catheter, this is an invasive procedure that is used to diagnose PAH. You should discuss this option with your local Pulmonary Hypertension (PH) team.
Relatives under the age of 16 may participate in the study but must be seen at Great Ormond Street Hospital, London.
Remote recruitment and follow-up of adult relatives
Relatives may be recruited and followed-up remotely. This will initially involve a questionnaire and saliva/blood sample for DNA analysis. Relatives will be followed-up annually until the end of the study. They may be invited to attend their local PH centre to have clinical tests and bloods as a one off visit as well.
If you would like to discuss participation in the study you can:
Contact your local specialist Pulmonary Arterial Hypertension centre. Details can be found here (http://www.ipahcohort.com/contact-us/)
Telephone 01223 763094
Complete this form here and email to the address above.
Relative Website Information V2 11/01/2021 IRAS Project ID: 123349