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
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
Lack of PLP1 gene pathogenic variant
< 3 years; > 25 years of age
Or other reasons that an individual does not have an IEP
Contact the research team to learn more about this study.
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