Frequently Asked Questions
Project: “School Evaluation and Supports of Children with Pelizaeus-Merzbacher disease”
IRB: 1908479885 Indiana University-Riley
Who can participate?
In order to participate your child must be between 3 and 25 years of age and have a diagnosis of PMD. In addition, your child must be receiving or have previously received services from a public or public charter school. Participation will include sending in your child’s psychoeducational testing and Individualized Education Plan.
What is this study for?
A research team at Indiana University and Riley Hospital for Children is looking for information on:
1. How are schools currently determining what will support children with PMD at school?
2. What help children with PMD are using at school?
Why is the study being done?
Very little is known about what children with PMD need at school. This study will add to information about what is known for children with PMD and school supports. The team hopes that in the future, best practices may be established for children with PMD to support their learning.
Where is this information going?
Your child’s psychoeducational evaluation(s) and IEP(s) will be looked at by the research team only. Once information is pulled out of those documents that does not identify your child, it will be shared to help the medical community better understand children with PMD.
Who is on the research team?
Principle Investigator: Dr. Michelle Curtin, D.O.—Developmental-Behavioral Pediatrician
Key partners:
1. Dr. Celanie Christensen, M.D.—Neurodevelopmental Disabilities Pediatrician
2. Dr. Stephanie Jackson, M.D.—Child Neurologist & Sleep Medicine specialist
3. Dr. Christine Raches, Psy.D., BCBA—Child psychologist, board certified behavior analyst
The research team is multidisciplinary and represents a number of pediatric areas of expertise who work with children with complex neurological-developmental-behavioral disorders.
Who has access to our child’s information?
Only the research team primary investigators will have any of your child’s information that is recognizable (known as Protected Health Information or PHI). The information will be “de-identified,” meaning your child’s name, age, and other recognizable information will be removed during the research.
How much medical history and other personal information will be used?
The research team will have your child’s diagnosis of PMD, the gene change you identified on the consent form, information from the school papers about other conditions impacting your child in the school setting, and the state your child’s school is located.
What happens at the end of the study to my child’s information?
At the conclusion of the study, all original documents containing Protected Health Information will be destroyed.
How can my child/children be included?
You can send your child/children's information/documents a number of ways. You can submit the documents needed through our website, by email, fax, or through postal mail. Please see the "Participate" page is you're interested in having your child included.
Project: “School Evaluation and Supports of Children with Pelizaeus-Merzbacher disease”
IRB: 1908479885 Indiana University-Riley
Who can participate?
In order to participate your child must be between 3 and 25 years of age and have a diagnosis of PMD. In addition, your child must be receiving or have previously received services from a public or public charter school. Participation will include sending in your child’s psychoeducational testing and Individualized Education Plan.
What is this study for?
A research team at Indiana University and Riley Hospital for Children is looking for information on:
1. How are schools currently determining what will support children with PMD at school?
2. What help children with PMD are using at school?
Why is the study being done?
Very little is known about what children with PMD need at school. This study will add to information about what is known for children with PMD and school supports. The team hopes that in the future, best practices may be established for children with PMD to support their learning.
Where is this information going?
Your child’s psychoeducational evaluation(s) and IEP(s) will be looked at by the research team only. Once information is pulled out of those documents that does not identify your child, it will be shared to help the medical community better understand children with PMD.
Who is on the research team?
Principle Investigator: Dr. Michelle Curtin, D.O.—Developmental-Behavioral Pediatrician
Key partners:
1. Dr. Celanie Christensen, M.D.—Neurodevelopmental Disabilities Pediatrician
2. Dr. Stephanie Jackson, M.D.—Child Neurologist & Sleep Medicine specialist
3. Dr. Christine Raches, Psy.D., BCBA—Child psychologist, board certified behavior analyst
The research team is multidisciplinary and represents a number of pediatric areas of expertise who work with children with complex neurological-developmental-behavioral disorders.
Who has access to our child’s information?
Only the research team primary investigators will have any of your child’s information that is recognizable (known as Protected Health Information or PHI). The information will be “de-identified,” meaning your child’s name, age, and other recognizable information will be removed during the research.
How much medical history and other personal information will be used?
The research team will have your child’s diagnosis of PMD, the gene change you identified on the consent form, information from the school papers about other conditions impacting your child in the school setting, and the state your child’s school is located.
What happens at the end of the study to my child’s information?
At the conclusion of the study, all original documents containing Protected Health Information will be destroyed.
How can my child/children be included?
You can send your child/children's information/documents a number of ways. You can submit the documents needed through our website, by email, fax, or through postal mail. Please see the "Participate" page is you're interested in having your child included.
