School Evaluation and Supports of Children with Pelizaeus-Merzbacher disease

Are you eligible to participate in this study?

You may be eligible for this study if you meet the following criteria:

  • Conditions: Pelizaeus-Merzbacher disease
  • Age: Between 3 - 25 Years
  • Gender: Male or Female

Inclusion Criteria:

Children/Adolescents/Young Adults ages 3-25 years with 
Genetic diagnosis of Pelizaeus-Merzbacher disease 
Participating in the national PMD Family Support group (https://www.pmdfamilysupport.com/) 
Served by a public school/public charter school (responsible under IDEA)
For those who have graduated within the age range, individuals for whom family/guardians have access to psychoeducational testing and/or IEP will be eligible to share information

Exclusion Criteria: 

Family/Guardian refusal
Lack of PLP1 gene pathogenic variant
< 3 years; > 25 years of age
Homeschool enrollment
Or other reasons that an individual does not have an IEP

Recruitment Status

Open

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