Table 6.
Impact |
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1. Findings from the initiative could help to stimulate research, for example, into predictive biomarkers of disease progression (4.3) |
2. Findings from the initiative could help to improve communication between HCPs and patients with FD regarding when to start (and stop) disease-specific therapy (4.1) |
3. Findings from the initiative could lead to the earlier initiation of disease-specific treatment in patients with FD (4.1) |
4. Findings from the initiative could help to improve outcomes and/or quality of life of patients with FD (4.0) |
5. Findings from the initiative could help to improve clinical practice and the overall management of patients with FD (4.0) |
6. Findings from the initiative could help to support negotiations relating to reimbursement of treatment (4.0) |
7. Findings from the initiative could help to increase HCP awareness and understanding of the need for individualized assessment and regular multi disciplinary follow-up of patients with FD (4.0) |
8. Findings from the initiative could lead to the achievement of consensus on when to start (and stop) disease-specific treatment in patients with FD (4.0) |
9. Findings from the initiative could lead to the modification of national treatment guidelines to include predictive biomarkers of disease progression (3.9) |
Data in parentheses are the mean of agreement scores awarded by 21 panel members based on a 5-point pivoted Likert scale (1 = strongly disagree; 3 = neither agree nor disagree; 5 = strongly agree). The criterion for consensus was an agreement rating of at least 4 awarded by more than 67% of those who voted
Bold indicates the consensus statements describing the possible impact of PREDICT-FD
FD, Fabry disease; HCP, healthcare professional; PREDICT-FD, PRoposing Early Disease Indicators for Clinical Tracking in Fabry Disease