Ignite Creation Date:
2024-05-06 @ 1:49 AM
Last Modification Date:
2024-10-26 @ 11:10 AM
Study NCT ID:
NCT01907295
Status:
UNKNOWN
Last Update Posted:
2022-05-20
First Post:
2013-07-08
Brief Title:
National Cohort Study of Idiopathic and Heritable Pulmonary Arterial Hypertension
Sponsor:
University of Cambridge
Organization:
University of Cambridge
Study Overview
Official Title:
National Cohort Study of Idiopathic and Heritable Pulmonary Arterial Hypertension
Status:
UNKNOWN
Status Verified Date:
2022-05
Last Known Status:
RECRUITING
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
NAIAD
Brief Summary:
Pulmonary arterial hypertension PAH or high blood pressure in the lungs is a rare condition that can shorten life Although the cause of this disease is usually unknown in about 70 of heritable and 15-20 of idiopathic cases there is a change in a gene a mutation that controls how blood vessels grow and function The gene is called bone morphogenetic protein type receptor 2 BMPR2 Although mutations in BMPR2 are a risk factor for PAH not everyone with a mutation gets the disease Additional genetic and environmental factors are likely to contribute The investigators suspect that mutations in other genes are responsible for some cases of PAH In this study the investigators aim to recruit all patients with PAH and some of their relatives and follow them up for several years The investigators hope to discover new mutations for this disease and to determine what factors lead to poor outcome and to understand what triggers disease in patients with mutations
Who can participate Adults with PAH their relatives and controls one off blood sample
Who can participate Adults with PAH their relatives and controls one off blood sample
Detailed Description:
What does the study involve
PAH patients will be seen at their local centre by their service team but they will have additional bloods taken Relatives of PAH patients will be seen every year at their nearest PAH centre Tests will include
Epidemiology Questionnaire to assess factors affecting health
An echocardiogram ECHO to assess the size shape pumping action and the extent of any damage to the heart
Lung function tests which include blowing measurements to assess gas volumes within the lungs as well as assessment of how the lungs exchange gases
Optional right heart catheterisation RHC to determine how much blood your heart is pumping while you are resting and on exercise Optional Cardiac Magnetic Resonance tests To measure heart function to be done only once
6 minute walk test To measure exercise capacity
Cardiopulmonary exercise test A bicycle exercise test which will indicate how much blood your heart pumps while resting and with different levels of exercise
Electrocardiogram ECG a test that measures the electrical activity of the heart
Blood tests
ControlsBlood sample and medical data collected once
PAH patients will be seen at their local centre by their service team but they will have additional bloods taken Relatives of PAH patients will be seen every year at their nearest PAH centre Tests will include
Epidemiology Questionnaire to assess factors affecting health
An echocardiogram ECHO to assess the size shape pumping action and the extent of any damage to the heart
Lung function tests which include blowing measurements to assess gas volumes within the lungs as well as assessment of how the lungs exchange gases
Optional right heart catheterisation RHC to determine how much blood your heart is pumping while you are resting and on exercise Optional Cardiac Magnetic Resonance tests To measure heart function to be done only once
6 minute walk test To measure exercise capacity
Cardiopulmonary exercise test A bicycle exercise test which will indicate how much blood your heart pumps while resting and with different levels of exercise
Electrocardiogram ECG a test that measures the electrical activity of the heart
Blood tests
ControlsBlood sample and medical data collected once
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None