Pulmonary Arterial HypertensionDELPHI-2NCT01600898
Screening of Pulmonary Arterial Hypertension in BMPR2 Mutation Carriers
An observational study of Pulmonary Arterial Hypertension, run by Assistance Publique - Hôpitaux de Paris at 1 site in France.
Trial summary
In this prospective study, the investigators will implement a systematic screening program and 3-year follow-up in a cohort of asymptomatic BMPR2 mutation carriers. This study is designed to: determine predictive factors (biological, functional, radiological and hemodynamic) of development of PAH monitor these… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Pulmonary Arterial Hypertension
- How many people
- 55 participants
- Where
- 1 siteFrance
- Study dates
- Mar 2012to Jul 2016
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: asymptomatic BMPR2 mutation carriers.
Who may be able to join
- men and women over 18 years old,
- carriers of a BMPR2 mutation without known PAH,
- having given his informed consent
Who cannot join
- men and women under 18 years old,
- patients with a known PAH,
- pregnant women,
- adults protected,
- detainees,
- people in emergencies,
- people refusing or unable to give informed consent,
- no affiliation to a regime of social security.
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Screening and Risk Factors of Pulmonary Arterial Hypertension in BMPR2 Mutation Asymptomatic Carriers
In this prospective study, the investigators will implement a systematic screening program and 3-year follow-up in a cohort of asymptomatic BMPR2 mutation carriers. This study is designed to:
- determine predictive factors (biological, functional, radiological and hemodynamic) of development of PAH
- monitor these subjects' clinical, functional, biological, echocardiographic and hemodynamic characteristics
- assess the risk of occurrence of PAH
- screen patients with PAH at an early stage of disease and offer them an early management
- constitute a collection of biological samples (0, 12, 24 months follow-up) of asymptomatic BMPR2 mutation carriers.
Read the detailed description
Introduction:
Pulmonary arterial hypertension is characterized by remodeling of small pulmonary arteries leading to a progressive increase in pulmonary vascular resistance resulting to right heart failure and ultimately death. The disease is diagnosed when symptomatic, demonstrating the existence of an already advanced form of the disease. Indeed, there is no simple tool allowing an early diagnosis of PAH and the disease is usually diagnosed in advanced stages. Diagnostic confirmation of PAH is based on the elevation of mean pulmonary arterial pressures measured during right heart catheterization. Despite the development of specific treatment in recent years, PAH remains a disease with poor prognosis, for which no cure is possible, apart from lung transplantation in selected cases. However recent studies have shown that specific drug therapy in early disease stages could improve the prognosis of this life threatening disease. This is why it seems important to establish early diagnosis of PAH, especially in high-risk populations such as asymptomatic carriers of BMPR2 (Bone Morphogenetic Protein Receptor 2) mutations. PAH due to BMPR2 mutations is an autosomal dominant disease with incomplete penetrance. Even if there are no accurate data in the literature, it is estimated that 20% of patients with BMPR2 mutations develop PAH in the course of their life. The implementation of a genetic counseling in the National Reference Center for Severe Pulmonary Hypertension (BICETRE Hospital) allowed us to propose systematic assessment of BMPR2 mutations in patients with idiopathic or familial PAH. In 2012 we identified 130 PAH patients carriers of a BMPR2 mutation. This approach has enabled the detection of families at risk for PAH and to offer genetic counseling to the asymptomatic relatives with BMPR2 mutation. However, data on the evolution of asymptomatic carriers of BMPR2 mutation are lacking. Furthermore, there is no available consensus or guideline on how to follow this population. To date, it is not possible to differentiate asymptomatic subjects carrying BMPR2 mutations that will develop PAH from those who will never develop this disease. However, given the high risk of these subjects to develop PAH (risk of 20% against 25/million in the general population), and the limited knowledge of characteristics of this population, it seems essential to offer a prospective follow-up to this population at risk.
Aim and objective:
The main objective of this study to is follow prospectively for 3 years a cohort of asymptomatic carriers of BMPR2 mutation to:
- determine predictive factors (biological, functional, radiological and hemodynamic) of development of PAH
- monitor these subjects' clinical, functional, biological, echocardiographic and hemodynamic characteristics
- assess the risk of occurrence of PAH
- screen patients with PAH at an early stage of disease and offer them an early management
- constitute a collection of biological samples (0, 12, 24 months follow-up) of asymptomatic BMPR2 mutation carriers.
Methodology :
Evaluation of subjects at inclusion after informed consent (Ethics Committee approval obtained since 2011):
- Clinical evaluation: dyspnea assessed by NYHA functional class (I-IV), signs of right heart failure
- Chest radiograph, electrocardiogram
- Right heart catheterization (in a subset of volunteers): measurement of mean pulmonary artery pressure, pulmonary artery occlusion pressure (PAOP) and cardiac output (CO) at rest and during exercise
- Echocardiography: measurement of the velocity of tricuspid regurgitation (VIT), measurement of TAPSE and Tei index, pericardial effusion, dilatation and hypertrophy of the right ventricle
- Stress Test: VO2 peak and VO2 specific, VE minute ventilation, VD / VT dead space, ventilatory reserve, alveolar-arterial gradient, pulse oxygen, PaO2
- Lung function tests: measurement of DLCO and DLNO
- Magnetic resonance imaging (MRI) measuring end systolic diastolic volumes of the right ventricle, right ventricular mass, septal curvature, diameter of the pulmonary arteries, surface of the right atrium
- Biology: Determination of plasma NT-proBNP, uric acid, serum sodium, creatinine, PDGF, ET-1, ET-3, CRPus, IL-6, soluble c-kit, CXCL12, progenitors and circulating fibrocytes
Subjects will be evaluated as outpatients scheduled to the National Reference Center for Severe Pulmonary Hypertension 12, 24 and 36 months after inclusion or if symptoms appear (dyspnoea, right heart failure, malaise or syncope).
During these consultations, the assessment will include: clinical evaluation, chest radiograph, electrocardiogram, echocardiogram, stress testing, pulmonary function tests, magnetic resonance imaging, and biology.
To confirm the suspicion of PAH and assess their severity, right heart catheterization at rest and during exercise will be offered according to a decision algorithm.
Right heart catheterization will be performed if one of the following abnormalities is found:
- Dyspnea, malaise or unexplained syncope
- Tricuspid regurgitation velocity ≥ 2.8 m / s
- Decrease of the specific peak VO2 ≥ 20% as compared to the gold standard
If diagnosis of PAH is confirmed, patients will be treated according to the recently updated recommendations of the European Respiratory Society and European Society of Cardiology.
- Conditions
- Pulmonary Arterial Hypertension
- Keywords
- Asymptomatic carriers of a BMPR2 mutation, follow up study
- Medical subject headings
- Pulmonary Arterial Hypertension
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Asymptomatic BMPR2 mutation carriers | Asymptomatic BMPR2 mutation carriers |
What is being measured
The primary outcome is the main question the study is designed to answer.
predictive factors of the occurrence of PAH
follow prospectively a cohort of asymptomatic BMPR2 mutation carriers to determine predictive factors of the occurrence of PAH.
Measured: 2 years
Secondary outcomes (1)
Evolution of characteristics of asymptomatic BMPR2 mutation carriers
monitor these subjects' clinical, functional, biological, echocardiographic and hemodynamic characteristics, assess the risk of occurrence of PAH , screen patients with PAH at an early stage of disease and offer them an early management, constitute a collection of biological samples (0, 12, 24 months follow-up) of asymptomatic BMPR2 mutation carriers.
Measured: 2 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted17 May 2012 (estimated)
- Study startMar 2012
- Primary completionJul 2016
- Study completionJul 2016
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (2)Papers the sponsor has linked to this study.
- Other trials for Pulmonary Arterial HypertensionStudies of the same condition, open and under way.
- More trials run by Assistance Publique - Hôpitaux de ParisThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 55 participants (actual)
Sponsor and investigators
- Lead sponsor
- Assistance Publique - Hôpitaux de Paris
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- David Montani, Md, PhD, Principal investigator, Assistance-Publique Hôpitaux de Paris, Hôpital Bicêtre, Service de pneumologie
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT01600898
- Sponsor's protocol ID
- P100104
- Other IDs
- AOM 10175
- Acronym
- DELPHI-2
- Status last verified
- Nov 2019
- First submitted
- 15 May 2012
- Last updated
- 13 Jan 2021
- Results posted
- No
- Data monitoring committee
- Yes
Publications
Montani D, Girerd B, Jais X, Laveneziana P, Lau EMT, Bouchachi A, Hascoet S, Gunther S, Godinas L, Parent F, Guignabert C, Beurnier A, Chemla D, Herve P, Eyries M, Soubrier F, Simonneau G, Sitbon O, Savale L, Humbert M. Screening for pulmonary arterial hypertension in adults carrying a BMPR2 mutation. Eur Respir J. 2021 Jul 22;58(1):2004229. doi: 10.1183/13993003.04229-2020. Print 2021 Jul.
PubMed 33380512Gerges C, Beurnier A, Jais X, Herve P, Lau EMT, Girerd B, Gunther S, Bouchachi A, Jevnikar M, Boucly A, Bogaard HJ, Simonneau G, Sitbon O, Savale L, Chemla D, Humbert M, Montani D. Role of Exercise Hemodynamics in the Prediction of Pulmonary Arterial Hypertension in BMPR2 Mutation Carriers. Chest. 2024 Nov;166(5):1173-1183. doi: 10.1016/j.chest.2024.06.3808. Epub 2024 Jul 24.
PubMed 39059577
Study at a glance
From the registry record, last updated by the sponsor on 13 Jan 2021. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Screening and Risk Factors of Pulmonary Arterial Hypertension in BMPR2 Mutation Asymptomatic Carriers
- ClinicalTrials.gov ID
- NCT01600898
- Acronym / sponsor ID
- DELPHI-2 / P100104
- Conditions
- Pulmonary Arterial Hypertension
- Keywords
- Asymptomatic carriers of a BMPR2 mutation, follow up study
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 55 participants (actual)
- Lead sponsor
- Assistance Publique - Hôpitaux de ParisUniversity, hospital or other
- Study start
- Mar 2012
- Primary completion
- Jul 2016 (actual)
- Study completion
- Jul 2016 (actual)
- First posted
- 17 May 2012 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
In this prospective study, the investigators will implement a systematic screening program and 3-year follow-up in a cohort of asymptomatic BMPR2 mutation carriers. This study is designed to:
- determine predictive factors (biological, functional, radiological and hemodynamic) of development of PAH
- monitor these subjects' clinical, functional, biological, echocardiographic and hemodynamic characteristics
- assess the risk of occurrence of PAH
- screen patients with PAH at an early stage of disease and offer them an early management
- constitute a collection of biological samples (0, 12, 24 months follow-up) of asymptomatic BMPR2 mutation carriers.
Detailed description
Introduction:
Pulmonary arterial hypertension is characterized by remodeling of small pulmonary arteries leading to a progressive increase in pulmonary vascular resistance resulting to right heart failure and ultimately death. The disease is diagnosed when symptomatic, demonstrating the existence of an already advanced form of the disease. Indeed, there is no simple tool allowing an early diagnosis of PAH and the disease is usually diagnosed in advanced stages. Diagnostic confirmation of PAH is based on the elevation of mean pulmonary arterial pressures measured during right heart catheterization. Despite the development of specific treatment in recent years, PAH remains a disease with poor prognosis, for which no cure is possible, apart from lung transplantation in selected cases. However recent studies have shown that specific drug therapy in early disease stages could improve the prognosis of this life threatening disease. This is why it seems important to establish early diagnosis of PAH, especially in high-risk populations such as asymptomatic carriers of BMPR2 (Bone Morphogenetic Protein Receptor 2) mutations. PAH due to BMPR2 mutations is an autosomal dominant disease with incomplete penetrance. Even if there are no accurate data in the literature, it is estimated that 20% of patients with BMPR2 mutations develop PAH in the course of their life. The implementation of a genetic counseling in the National Reference Center for Severe Pulmonary Hypertension (BICETRE Hospital) allowed us to propose systematic assessment of BMPR2 mutations in patients with idiopathic or familial PAH. In 2012 we identified 130 PAH patients carriers of a BMPR2 mutation. This approach has enabled the detection of families at risk for PAH and to offer genetic counseling to the asymptomatic relatives with BMPR2 mutation. However, data on the evolution of asymptomatic carriers of BMPR2 mutation are lacking. Furthermore, there is no available consensus or guideline on how to follow this population. To date, it is not possible to differentiate asymptomatic subjects carrying BMPR2 mutations that will develop PAH from those who will never develop this disease. However, given the high risk of these subjects to develop PAH (risk of 20% against 25/million in the general population), and the limited knowledge of characteristics of this population, it seems essential to offer a prospective follow-up to this population at risk.
Aim and objective:
The main objective of this study to is follow prospectively for 3 years a cohort of asymptomatic carriers of BMPR2 mutation to:
- determine predictive factors (biological, functional, radiological and hemodynamic) of development of PAH
- monitor these subjects' clinical, functional, biological, echocardiographic and hemodynamic characteristics
- assess the risk of occurrence of PAH
- screen patients with PAH at an early stage of disease and offer them an early management
- constitute a collection of biological samples (0, 12, 24 months follow-up) of asymptomatic BMPR2 mutation carriers.
Methodology :
Evaluation of subjects at inclusion after informed consent (Ethics Committee approval obtained since 2011):
- Clinical evaluation: dyspnea assessed by NYHA functional class (I-IV), signs of right heart failure
- Chest radiograph, electrocardiogram
- Right heart catheterization (in a subset of volunteers): measurement of mean pulmonary artery pressure, pulmonary artery occlusion pressure (PAOP) and cardiac output (CO) at rest and during exercise
- Echocardiography: measurement of the velocity of tricuspid regurgitation (VIT), measurement of TAPSE and Tei index, pericardial effusion, dilatation and hypertrophy of the right ventricle
- Stress Test: VO2 peak and VO2 specific, VE minute ventilation, VD / VT dead space, ventilatory reserve, alveolar-arterial gradient, pulse oxygen, PaO2
- Lung function tests: measurement of DLCO and DLNO
- Magnetic resonance imaging (MRI) measuring end systolic diastolic volumes of the right ventricle, right ventricular mass, septal curvature, diameter of the pulmonary arteries, surface of the right atrium
- Biology: Determination of plasma NT-proBNP, uric acid, serum sodium, creatinine, PDGF, ET-1, ET-3, CRPus, IL-6, soluble c-kit, CXCL12, progenitors and circulating fibrocytes
Subjects will be evaluated as outpatients scheduled to the National Reference Center for Severe Pulmonary Hypertension 12, 24 and 36 months after inclusion or if symptoms appear (dyspnoea, right heart failure, malaise or syncope).
During these consultations, the assessment will include: clinical evaluation, chest radiograph, electrocardiogram, echocardiogram, stress testing, pulmonary function tests, magnetic resonance imaging, and biology.
To confirm the suspicion of PAH and assess their severity, right heart catheterization at rest and during exercise will be offered according to a decision algorithm.
Right heart catheterization will be performed if one of the following abnormalities is found:
- Dyspnea, malaise or unexplained syncope
- Tricuspid regurgitation velocity ≥ 2.8 m / s
- Decrease of the specific peak VO2 ≥ 20% as compared to the gold standard
If diagnosis of PAH is confirmed, patients will be treated according to the recently updated recommendations of the European Respiratory Society and European Society of Cardiology.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Asymptomatic BMPR2 mutation carriers | – | –Asymptomatic BMPR2 mutation carriers |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- asymptomatic BMPR2 mutation carriers.
Key inclusion criteria (3 listed)
- men and women over 18 years old,
- carriers of a BMPR2 mutation without known PAH,
- having given his informed consent
Key exclusion criteria (8 listed)
- men and women under 18 years old,
- patients with a known PAH,
- pregnant women,
- adults protected,
- detainees,
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
predictive factors of the occurrence of PAH
Time frame: 2 years
follow prospectively a cohort of asymptomatic BMPR2 mutation carriers to determine predictive factors of the occurrence of PAH.
1 secondary outcome
Evolution of characteristics of asymptomatic BMPR2 mutation carriers
Time frame: 2 years
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 13 Jan 2021.
- Results publication: PubMed 33380512Montani D, Girerd B, Jais X, Laveneziana P, Lau EMT, Bouchachi A, Hascoet S, Gunther S, Godinas L, Parent F, Guignabert C, Beurnier A, Chemla D, Herve P, Eyries M, Soubrier F, Simonneau G, Sitbon O, Savale L, Humbert M. Screening for pulmonary arterial hypertension in adults carrying a BMPR2 mutation. Eur Respir J. 2021 Jul 22;58(1):2004229. doi: 10.1183/13993003.04229-2020. Print 2021 Jul.
- Derived from this study: PubMed 39059577Gerges C, Beurnier A, Jais X, Herve P, Lau EMT, Girerd B, Gunther S, Bouchachi A, Jevnikar M, Boucly A, Bogaard HJ, Simonneau G, Sitbon O, Savale L, Chemla D, Humbert M, Montani D. Role of Exercise Hemodynamics in the Prediction of Pulmonary Arterial Hypertension in BMPR2 Mutation Carriers. Chest. 2024 Nov;166(5):1173-1183. doi: 10.1016/j.chest.2024.06.3808. Epub 2024 Jul 24.
- We thank the funding program PHRC that funded this study. We thank the Clinical Research Unit Paris Sud (Bicetre hospital - APHP) for monitoring and coordinating this study.Link provided by the sponsor.
Related trials for Pulmonary Arterial Hypertension
Not yet recruitingPhase 2/3
An Open-Label Extension Study to Evaluate Inhaled Treprostinil SMI in Participants With Pulmonary Hypertension Associated With Chronic Obstructive Pulmonary Disease (PH-COPD)
Pulmonary Hypertension Associated With Chronic Obstructive Pulmonary Disease
Not yet recruitingPhase 2
Study of Treprostinil Administered Via Soft Mist Inhaler (SMI) in Participants With Pulmonary Hypertension Associated With Chronic Obstructive Pulmonary Disease (PH-COPD)
Pulmonary Hypertension Associated With Chronic Obstructive Pulmonary Disease
Active, not recruitingPhase 1
A Pilot Study of Microbiota Transplant With Antibiotic Preconditioning and Fiber Supplementation in Pulmonary Arterial Hypertension (GUT RESTORE-PAH)
Pulmonary Arterial Hypertension
RecruitingObservational study
Natural History Study of Biomarkers in Pulmonary Arterial Hypertension
Pulmonary Disease, Pulmonary Hypertension
Active, not recruitingPhase 1
Study of Intravenous ZMA001 in Healthy Subjects
Pulmonary Arterial Hypertension PAH
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
David Montani, Md, PhD principal investigator
Assistance-Publique Hôpitaux de Paris, Hôpital Bicêtre, Service de pneumologie
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Pulmonary Arterial Hypertension, run by Assistance Publique - Hôpitaux de Paris at 1 site in France.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 8 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 13 Jan 2021. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in France. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
predictive factors of the occurrence of PAH (time frame: 2 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT01600898, which also lists 2 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 13 Jan 2021.