School Evaluation and Supports of Children with Pelizaeus-Merzbacher disease

Recruiting
3 years - 25 years
All
1 Location

Brief description of study

Describe how schools look at the needs of children with Pelizaeus-Merzbacher disease and how schools support those children in their school environment to help with learning needs

Eligibility of study

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

  • Conditions: Pelizaeus-Merzbacher disease
  • Age: 3 years - 25 years
  • Gender: All

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

Updated on 04 Aug 2024. Study ID: 1908479885

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