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Table 6 Consensus statements describing the possible impact of PREDICT-FD

From: Do clinical guidelines facilitate or impede drivers of treatment in Fabry disease?

Impact

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)

  1. 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
  2. Bold indicates the consensus statements describing the possible impact of PREDICT-FD
  3. FD, Fabry disease; HCP, healthcare professional; PREDICT-FD, PRoposing Early Disease Indicators for Clinical Tracking in Fabry Disease