School Evaluation and Supports of Children with Pelizaeus-Merzbacher disease

Study on Educational Support for Children with a Rare Genetic Disorder

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 19 Feb 2024. Study ID: 1908479885

This study investigates how schools address the needs of children with Pelizaeus-Merzbacher disease, a rare genetic disorder affecting the nervous system. The purpose is to understand the support provided in school settings to accommodate learning needs. Pelizaeus-Merzbacher disease can cause problems with movement, coordination, and learning abilities.

Participants will share information about their educational experiences, including any psychoeducational testing and Individualized Education Programs (IEPs). The study will gather data on how schools implement strategies and resources to support students with this condition, focusing on public or public charter schools.

  • Who can participate: Children, adolescents, and young adults aged 3 to 25 years with a genetic diagnosis of Pelizaeus-Merzbacher disease can participate. Participants must be involved with the national PMD Family Support group and served by a public school or public charter school. Exclusion criteria include individuals outside the specified age range and those not enrolled in the specified educational settings.
  • Study details: Participants will be asked to provide information about their educational experiences, including psychoeducational testing and IEPs if available. This information will help to understand how schools support learning needs for those with Pelizaeus-Merzbacher disease.

Find a site

Message sent successfully.
We have submitted the information you provided to the research team at the location you chose. For your records, we have sent a copy of the message to your email address.
If you would like to be informed of other studies that may be of interest to you, you may sign up for Patient Notification Service.
Sign up

Send a message

Enter your contact details to connect with study team

Investigator Avatar

Primary Contact

First name*
Last name*
Email*
Phone number*
Preferred way of contact label
Race
Ethnicity
Other language

Default Content Message Here