Table 3.

Implications of a formal diagnosis of BDUC6,21

AdvantagesDisadvantages
Registration at an HCC to provide access to expert clinical and diagnostic services Excessive concern about bleeding risk with surgery, lifestyle, and sporting activities 
Lifestyle advice about avoiding NSAID, monitoring HMB and iron deficiency Uncertainty about the provisional diagnosis until further scientific advances are made 
Appreciation of the problem for surgical bleeding risk/benefit Additional health care cost and laboratory testing 
Personalised management and patient preference Delay in planning of surgery 
Avoid unnecessary blood product use to treat hemorrhage Unnecessary use of hemostatic agents and blood products 
Awareness of the potential for bleeding in other family members Potential unnecessary health and life insurance consequences 
Defining a bleeding phenotype cohort for future research Anxiety and guilt about the potential familial nature of the bleeding disorder 
 Avoiding anti-thrombotic therapies in people with established cardiovascular disease 
AdvantagesDisadvantages
Registration at an HCC to provide access to expert clinical and diagnostic services Excessive concern about bleeding risk with surgery, lifestyle, and sporting activities 
Lifestyle advice about avoiding NSAID, monitoring HMB and iron deficiency Uncertainty about the provisional diagnosis until further scientific advances are made 
Appreciation of the problem for surgical bleeding risk/benefit Additional health care cost and laboratory testing 
Personalised management and patient preference Delay in planning of surgery 
Avoid unnecessary blood product use to treat hemorrhage Unnecessary use of hemostatic agents and blood products 
Awareness of the potential for bleeding in other family members Potential unnecessary health and life insurance consequences 
Defining a bleeding phenotype cohort for future research Anxiety and guilt about the potential familial nature of the bleeding disorder 
 Avoiding anti-thrombotic therapies in people with established cardiovascular disease 
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