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News highlights and publications relevant to RettSearch will continue to be listed here so please keep checking back for the latest news and updates.

RETTSEARCH NEWS:

  1. The current guidelines (DSM-IV) list Rett syndrome as one of four specific Pervasive Developmental Disorders, a term that refers to autistic disorders.
  2. Under the new guidelines (DSM-5), Rett syndrome will not be a specific autistic disorder. An individual with Rett syndrome and autistic disorder will be diagnosed as "Autism Spectrum Disorder associated with MECP2 mutations (or associated with Rett syndrome)".
  3. These changes were based on an exhaustive review of the literature and the consideration that Rett syndrome is not different from fragile X syndrome or other genetic disorders, in terms of its relationship with autism.
  4. Thus, an individual with Rett syndrome who does not meet criteria for Autism Spectrum Disorder will not receive a DSM diagnosis unless other mental health disorders are present (e.g., anxiety, depression).
  5. The DSM guidelines are primarily for psychiatric disorders; therefore, any DSM change will not affect neurologic diagnoses or guidelines. Neurologists tend to predominantly use ICD (WHO) codes, which will only be modified in the psychiatric domain to be aligned with DSM-5.
  6. The RettSearch membership was consulted regarding the DSM changes and the vast majority agreed on them. However, Rett clinicians also realized that it is critical to obtain a unique ICD code for Rett syndrome (currently, generic codes as those for Cerebral Degeneration are mainly used). RettSearch will pursue such a code through a formal application process.
  7. The RettSearch membership thinks that the proposed DSM changes will not affect delivery of services, since any individual with Rett syndrome who needs autism-related services will be able to obtain them through the primary diagnostic label of Autism Spectrum Disorder. RettSearch members also think that a unique ICD code will be greatly beneficial for affected individuals, differentiating them from others with different developmental disorders.

RETT RESEARCH ARTICLES AND PUBLICATIONS:



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