Have you ever wondered if [x, y, z] is typical of a child with a disorder of the corpus callosum?
We’re hoping to answer these questions!
The DCC Lifespan Studies are a part of a research program from California Institute of Technology and University of Minnesota, studying the development of infants and children with disorders of the corpus callosum (DCC). We are seeking better ways to help children with DCC grow to their full potential by studying mental and behavioral development in infants and children with DCC. Over the last 10 years, we have collected data from over 500 individuals with a DCC and have published research on a range of aspects of development.
This is both a longitudinal and cross-sectional study, meaning that we track individuals of ages 6 months – 17 years over multiple years. This helps to highlight differences both within and between individuals, leading to a more nuanced overview of typicality.
(Click here to learn about adaptive functioning in infants with ACC!)
(Or here to learn about social and communication skills in infants with ACC!)
We are now beginning to utilize the plethora of “background” information, such as diagnosis information, medical history, developmental history, and more, in this natural history study. Natural history studies are a type of study that investigate the progression of a disorder over time. This is done by using anecdotal information from our participants to get a better idea of what is “typical” of DCC.
Our study includes information about:
- Callosal disorder diagnosis
- Corpus callosum diagnosis (pre- or postnatal)
- Diagnosis methods (scan type/age)
- Diagnosis over time (medical updates)
- Medical history
- Physical health (vision, hearing, cardiac, seizures, medications)
- Psychological health (ASD diagnosis, psychiatric diagnoses)
- Family background
- Family medical history (history of DCC or ASD)
- Demographic information (race, ethnicity, education, income)
- Pregnancy & birth history
- Conception
- Pregnancy complications (illness, physical trauma, medications, substance use)
- Delivery complications (breathing, infections, hospital stays)
- Development history
- Age of first word and steps
- Performance in school, social skills, sleep, feeding issues
Participants
In table 1, we see the diagnosis and group breakdown of the selective sample used for this webinar. We are using this smaller sample because they have submitted a postnatal brain scan, which allows us to confidently attribute findings to certain groups/diagnoses.
Table 1. Callosal disorder and group. Our verified sample of 222 participants is broken down by callosal disorder diagnosis and additional pathology grouping.
Developmental Milestones
- Physical Milestones
- Crawling
Figure 1. Distribution of age of achievement: crawling.
Figure 2. Distribution of age of achievement: Pull to a stand.
Figure 3. Distribution of age of achievement: First steps.
Figure 4. Distribution of age of achievement: Babble.
Figure 5. Distribution of age of achievement: First words.
Therapies & Interventions
Figure 6. Therapy attended by group and diagnosis: Occupational therapy.
Figure 7. Therapy attended by group and diagnosis: Speech therapy.
Figure 8. Therapy attended by group and diagnosis: Physical therapy.
Figure 9. Therapy attended by group and diagnosis: Vision therapy.
Figure 10. Therapy attended by group and diagnosis: Psychological therapy.
Takeaways
- Milestones:
- Individuals with DCC Plus show a delay in milestone achievement, compared to Individuals with Isolated DCC.
- Therapies:
- Individuals with HCC tend to seek intervention more often than those with CACC and PACC, across both Isolated and Plus groups.
- Individuals with DCC Plus tend to seek intervention more often than those with Isolated DCC.
- Overall:
- Seek intervention as early as possible to support the best possible outcome.
- Seek interventions before delays can begin!
Presenters: Ella Bohlman, B.S. and Lynn K. Paul, Ph.D.
Join us for Part 3 of our 4-part Natural History Research Webinar Series: “Supporting Development: Intervention and Treatment in the Early Years.”
Natural History research helps bridge the gap between patient experience and professional expertise by transforming real-life stories into the empirical evidence that informs medical, therapeutic, and educational care.
Through the Natural History Fellowship, sponsored by NODCC, researchers are working to turn families’ experiences into knowledge that helps professionals better understand the wide range of outcomes in Disorders of the Corpus Callosum (DCC).
This session focuses on early development, including:
-Developmental milestones
-Therapies
-Early intervention
Whether you are a family member, self-advocate, clinician, educator, or researcher, this webinar will provide valuable insights into patterns that may shape early development and long-term outcomes in DCC.