AzTrials
AzTrials

Cardiovascular DiseasesBRAVENCT04514445

The BRAVE Study- The Identification of Genetic Variants Associated With Bicuspid Aortic Valve Using a Combination of Case-control and Family-based Approaches.

An observational study of Cardiovascular Diseases, run by University Hospitals, Leicester at 4 sites in United Kingdom.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
Search all trials

Trial summary

Bicuspid aortic valve (BAV) is the most common congenital heart anomaly in the general population (1-2% of all individuals). In affected people, the aortic valve (the structure ensuring one way blood flow between the heart's left pumping chamber, the left ventricle and the main body artery, the aorta) consists of 2… Read more about this study

Who is it for?
Ages 10 to 99 years
Conditions the study is for
Cardiovascular Diseases
What is being tested?
Observational
How many people
700 participants
Where
4 sitesUnited Kingdom
Study dates
8 Sep 2015to 1 Dec 2027
Phase
Observational
Are there results?
Not yet: the study is under way

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 10 to 99 years
  • All sexes
  • Child, Adult, Older adult

Study population: Suitable patients with the condition (index patients) will be identified and invited to take part in the study by their healthcare teams. Relatives will be identified during the interview with the index patient and invited to take part in the study by the index patients. Subjects below the age of 18 will be provided with age specific documents (information leaflets, invitation letters and consent forms). Informed consent will be sought from such participants as well as parent or legal guardian of such participants.

Who may be able to join

  • 1. All outpatients and inpatients with diagnosed BAV, of either gender, aged 10 and above.
  • 2. Affected and unaffected first degree relatives meeting the age criteria.

Who cannot join

  • 1) Patients unable to give informed consent.
  • 2) Patients known to be infected with HIV, Hepatitis B, Hepatitis C or any other agent posing an infection risk from unfixed material.
  • 3) Patient with known cytogenetic disorders e.g. aneuploidia, chromosomal abnormalities and known karyotype abnormalities.
  • 4) Patients with diagnosed or suspected Mendelian syndromes (e.g. Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome).

Trial locations and contacts

4 sites in 1 country. Contact the study team or a site near you to ask about taking part.

Aidan Bolger, Dr contact

aidan.bolger@uhl-tr.nhs.uk

Radek Debiec, Dr contact

radoslaw.debiec@uhl-tr.nhs.uk

United Kingdom4 sites, 4 recruiting
  • Kettering General Hospital

    Kettering

    Simon Hetherington, Dr, simon.hetherington@kgh.nhs.uk

    Simon Hetherington, Dr

    Recruiting
  • University Hospitals of Leicester

    Leicester

    Radek Debiec, Dr, radoslaw.debiec@uhl-tr.nhs.uk

    Aidan Bolger, Dr

    Recruiting
  • Imperial College Healthcare NHS Trust

    London

    Andrew Chuwuemeka, Dr, andrew.chukwuemeka@nhs.net

    Andrew Chukwuemeka, Dr

    Recruiting
  • Sheffield Teaching Hospital NHS Foundation Trust

    Sheffield

    Nigel Wheeldon, Dr, nigel.wheeldon@sth.nhs.uk

    Nigel Wheeldon, Dr

    Recruiting

Other trials in United Kingdom

About this study

Official title: Bicuspid aoRtic vAlVe gEnetic Research - BRAVE Study

Bicuspid aortic valve (BAV) is the most common congenital heart anomaly in the general population (1-2% of all individuals). In affected people, the aortic valve (the structure ensuring one way blood flow between the heart's left pumping chamber, the left ventricle and the main body artery, the aorta) consists of 2 rather than 3 leaflets. This arrangement can cause the affected valve to have restricted opening or cause it to leak. Both situations put strain on the heart and patients with BAV across the age range may require surgery to replace the affected valve. BAV is therefore a condition associated with significant ill health and early mortality.

BAV is known to cluster in families and is likely to have a genetic cause. We don't fully understand the inheritance of BAV or the specific genes involved in its development. Learning more about this is the basis of the BRAVE study.

We will ask patients with BAV and their relatives (who may or may not have BAV) to take part in the study. Blood samples obtained from the participants will be used for analyses of their genetic composition. This information, linked with the clinical data concerning who does and does not have BAV, will potentially enable the identification of the gene changes responsible for the disease. This, we hope, will give us a much better understanding of the mechanisms leading to this serious and common condition.

Read the detailed description

Bicuspid aortic valve is the most common congenital valvular heart anomaly in the general population, with a prevalence estimated between 0.5 - 2%. It is more common in males than females with ratios reported between 2:1 and 3:1. The prevalence of BAV shows significant differences amongst different ethnic groups. BAV sometimes associates with other, non-valvular cardiovascular phenotypes, e.g. aortic coarctation, left dominant coronary artery system and intracranial aneurysms. Presence of BAV is strongly associated with dilatation of the ascending aorta irrespective of valve function. BAV related dilatation of the ascending aorta has been reported in 56% of those aged 30 years old and 88% of those aged 80 years old.

Presence of BAV can be associated with serious cardiovascular complications. In a long term observational study, the overall survival of BAV patients was equal to age and sex matched subjects from the general population, but BAV was associated with the need for surgical intervention in 27% of subjects. Additionally, cardiovascular medical events (heart failure, infective endocarditis and stroke) occurred in 33% of all subjects with BAV over that period.

BAV shows strong familial clustering, indicating that it has a strong genetic basis. In an echocardiographic survey of first degree relatives of patients with BAV 36.7% of families had at least 2 members with this anomaly. In a study of 309 subjects from 48 extended families heritability of BAV was calculated at 89%.A whole genome linkage scan performed in 38 extended families (324 individuals), showed evidence for linkage with 5 chromosomal loci - 18q22, 5q21, 13q34, 9q34, 17q24. When analysed separately, the majority of families contributed only to a single locus suggesting heterogenic genetic origin of BAV. Based on these observation an oligogenic model of autosomal dominant inheritance with reduced penetrance has been suggested.

Despite strong familial clustering, only few genetic loci have been associated with BAV so far. The strongest evidence exist for association of BAV with NOTCH1 gene (translocation associated protein) - the product of which is an important element in developmental control of cell fate decisions. Other candidate loci include TGFBR2 (transforming growth factor beta receptor 2 gene), GATA5 (GATA-binding protein gene) and eNOS (endothelial nitric oxide synthase gene). However, the identified loci explain only small proportion of BAV heritability.

Modern DNA analysis, notably next generation sequencing, allows variants associated with disease to be identified more rapidly and with increased precision. The objective of this project is to use such technology to identify genetic variants and genes predisposing to BAV using a combination of case-control and family-based approaches. A better understanding of the genetic underpinnings of BAV could in the future help to improve the management of this valvular heart condition.

This BRAVE study will recruit patients with antecedent or new diagnosis of BAV. As many relatives of the index patient as possible will be recruited to the study (family based analysis). They will be screened with echocardiography for the presence of BAV. Additional group of unrelated healthy individuals with three leaflet valves will be recruited for the purpose of case control analysis.

Demographic and clinical data from all participants will be collected using purposefully designed questionnaires and by accessing their medical records. Data on imaging investigations will be obtained from the medical records or from the echocardiogram performed for the purpose of screening.

Blood samples will be used for the purpose of isolation of genetic material and subsequent genetic analysis. Additional laboratory tests may be performed on the blood samples to provide supporting evidence to the results of genetic analysis.

The main analyses will consist of identifying and cataloguing genetic variants for each individual from the DNA sequencing and then seeing whether any particular variant or sets of variants are more commonly present in BAV subjects versus those without BAV (case-control design) or present in subjects with BAV but not in unaffected family members (family-based approach).

Being tested
Observational
Medical subject headings
Cardiovascular Diseases

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • ObservationalOther

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. The primary objective of the BRAVE study is to identify genetic loci associated with BAV.

    The main analyses will consist of identifying and cataloguing genetic variants for each individual from the DNA sequencing and then seeing whether any particular variant or sets of variants are more commonly present in BAV subjects versus those without BAV (case-control design) or present in subjects with BAV but not in unaffected family members (family-based approach).

    Measured: 48 Months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted17 Aug 2020
  2. Study start8 Sep 2015
  3. Primary completion1 Dec 2027 (estimated)
  4. Study completion1 Dec 2027 (estimated)

Resources

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
Family based
Time perspective
Retrospective
Enrolment
700 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT04514445
Sponsor's protocol ID
EDGE: 51674
Acronym
BRAVE
Status last verified
Feb 2026
First submitted
12 Aug 2020
Last updated
2 Mar 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
No

Questions about this trial

What is this clinical trial studying?

An observational study of Cardiovascular Diseases, run by University Hospitals, Leicester at 4 sites in United Kingdom.

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 2 inclusion and 4 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: looking for participants now, as of the sponsor's last update on 2 Mar 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 4 sites in United Kingdom. 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?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Aidan Bolger, Dr (aidan.bolger@uhl-tr.nhs.uk), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

The primary objective of the BRAVE study is to identify genetic loci associated with BAV. (time frame: 48 Months). It is what the study was designed to measure, not a finding.

Where can I read the original study information?
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 2 Mar 2026.

Free account

Log in to keep searching

You’ve used your 3 free searches. AzTrials is free: log in or create a free account to keep searching clinical trials and save the ones you want to follow.

Create a free accountLog in