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. 2020 Dec 14;15:348. doi: 10.1186/s13023-020-01633-z

Table 1.

Practical recommendations

Identification of only one clinical referent in each center
Necessity of comprehensive multidisciplinary assessment
Regular monitoring of pre-symptomatic ten years before PADO
Taking in charge newly identified pre-symptomatic carriers
Specific psychological support after pre-symptomatic testing in selected cases