0-TESTO COMPLETO.pdf - Fondazione Santa Lucia

RF07.41 – Access equity and qualitative standard of rehabilitation in rare diseases…
and hence a standardized rehabilitation will be available in the involved rehabilitation
centres.
Finally the efficacy of the network will be tested. A consensus on outcome
measures to be used for rehabilitation therapy will be produced.
MILESTONES ALONGSIDE THE PROJECT
1. Observational study on the current rehabilitation practice and rehabilitation’s
access for CMT patients in the national territory (o in four regions,
Lombardia, Liguria and Toscana, Lazio).
2. Consensus on standardized rehabilitation approach aimed at helping
CMT patients.
3. Development of a rehabilitation network (including website interface).
4. Evaluation of the efficacy of the rehabilitation network.
5. Consensus on outcome measures to evaluate intervention efficacy in
CMT.
6. Efficacy and feasibility of rehabilitation tested in a pilot study.
7. Evaluation of brain plasticity through an observational study for the
definition of cortical motor and sensory function in CMT patients.
8. New experimental protocol of gait analysis, identification of deambulation
pattern to develop rehabilitation protocol.
Si allega il programma dettagliato dell’Unità Operativa 6 che fa capo
alla Fondazione Santa Lucia.
2009 733