Eligibility  

Inclusion criteria 

• Aged 7–25

• Must either have:  

  • A family member with a known genetic mutation* for FTD or AD.  

  • A formal diagnosis of developmental dyslexia, ADHD, or ASD.  

• Participant is sufficiently fluent in English to complete all measures. 

• Children participants must be accompanied by an adult as a study informant (e.g., parent, other relative, close family friend who knows the child well). 

Exclusion criteria: 

• Presence of another neurologic disorder that could impact findings (e.g., multiple sclerosis) 

• Participant has a contraindication to MRI imaging. 

• Participant is unwilling to undergo cognitive testing and MRI scan.

Study Purpose

This study aims to understand brain development in children from families with a history of frontotemporal dementia (FTD) or Alzheimer’s disease (AD) compared to participants without gene mutations and participants with neurodevelopmental differences (dyslexia, ADHD, and ASD) without a history of familial neurodegenerative disease.

Conditions Studied

Childhood development in families with frontotemporal dementia (FTD) caused by genetic variation in a gene associated with FTD, such as microtubule associated protein tau (MAPT), progranulin (known as granulin or GRN), or chromosome 9 open reading frame 72 (C9ORF72). 

Childhood development in families with Alzheimer’s disease (AD) caused by variation in a gene associated with AD, such as presenilin (PSEN) 1 or 2, or amyloid precursor protein (APP). 

Childhood development in participants with neurodevelopmental differences, including developmental dyslexia, attention deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD)

What you can expect  

Testing

A neurological examination, emotions testing, neuropsychological testing, MRI scan, questionnaires, and a saliva sample for genetic analyses,* followed by a comprehensive feedback session with our study clinicians and a written summary upon request.

*Participants will not learn their mutation status.

Time Needed for the Visit

Participation in the study takes about 8 to 12 hours spread over two to three consecutive days or split up. We will do our best to work with you to accommodate any scheduling needs. 

Costs

No costs will be charged for any of the study procedures. Travel, accommodation, meals, and transportation associated with the study visit will be reimbursed. A small stipend will also be provided to help compensate for parental wages lost during study participation.