Bicuspid Aortic Valve Study

LCBRU Study Category

The Bicuspid Valve (BRAVE) study is being run by Radek Debiec.

The study is beginning as a study specific recruitment context for BRICCS, but will need a specific study protocol and separate ethics approval for the recruitment of minors.

Recruitment will involve family trios. This will require some changes to the REDCap questionnaire for BRICCS. Radek is reviewing the questionnaire and will advise on any questions that can be skipped, or additional questions required.

New Data Collection Instrument, triggered only for patients where recruitment context is 'study specific/bicuspid valve study'.

EXTRA QUESTIONS:

Case type? (bicuspid_case_type)
1, Index
2, Relative
Branching logic only to show this for study specific / bicuspid

Relationship: (bicuspid_relationship)
1, Offspring
2, Sibling
3, Parent
Branching logic only to show this for RELATIVE cases

ID of INDEX case: (bicuspid_reference_id)

(how can we reference the BPt ID for the INDEX case? Search in CiviCRM or REDCap? CiviCRM is probably the best way to do this) - show this question for everyone, including INDEX cases.

CHECK: DO BRICCS patients all go into CiviCRM in real time? YES THEY DO.

Not relevant to Bicuspid study

Risk factors: no alcohol or diet questions or physical activity

ADD Family history: Coarctation of aorta, hole in heart, aortic aneurysm, valve replacement (also add aortic aneurysm to the family history cause of death section)

Social: None of these relevant to bicuspid valve patients

Medical history: remove cholesterol, heart attack MI, angina, PVD, ashtma, COPD, AF.

ADD medical history (in the valvular heart disease section) add 'bicuspid aortic valve' and 'bicuspid pulmonary valve'. Change to tick boxes so patient can say yes to more than one.

ADD Hx of interventions, new options: coarctation repair,

NOTE: Why are the drugs not in alphabetical order?

10.03.2015: DONE in TEST system

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