Consensus guidelines on managing Rett syndrome across the lifespan.
Cary FuDallas ArmstrongEric MarshDavid LiebermanKathleen MotilRochelle WittShannon StandridgePaige NuesJane LaneTristen DinkelMonica CoenraadsJana von HehnMary JonesKatie HaleBernhard SuterDaniel GlazeJeffrey NeulAlan PercyTimothy A BenkePublished in: BMJ paediatrics open (2020)
The overall multisystem issues of RTT require primary care providers and other health professionals to manage complex medical comorbidities within the context of the whole individual and family. Given the median life expectancy well into the sixth decade, guidance is provided to health professionals to achieve current best possible outcomes for these special-needs individuals.