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Multisystem comorbidities in classic Rett syndrome: a scoping review.

Cary FuDallas ArmstrongEric MarshDavid LiebermanKathleen MotilRochelle WittShannon StandridgeJane LaneTristen DinkelMary JonesKatie HaleBernhard SuterDaniel GlazeJeffrey NeulAlan PercyTimothy A Benke
Published in: BMJ paediatrics open (2020)
Effective care coordination for RTT requires knowledge of and attention to multiple comorbidities across multiple unrelated organ systems. Many issues common to RTT can potentially be managed by a primary care provider but the need for sub-specialist referral can be anticipated. Since the median life expectancy extends into the sixth decade with evolving subspecialty requirements throughout this time, paediatric providers may be tasked with continued coordination of these comorbidities or transitioning to adult medicine and specialists with experience managing individuals with complex medical needs.
Keyphrases
  • primary care
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