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What is PANDABox?
The Primary Caregiver Administered Neurodevelopmental Assessment Box (PANDABox) is a novel telehealth-based platform that allows scientists to remotely monitor early clinical risk factors in rare neurogenetic conditions -- all without families needing to visit a lab.
Our Goal
This NIH-funded study observes the early development of children with neurogenetic conditions to better understand how their abilities and skills change over time. We are also interested in learning how to design better telehealth assessments that are accessible and helpful to families. If you choose to participate, we will ask you and your child to complete study activities such as online forms and smartphone-based surveys, phone interviews, and several at-home remote research assessments with our research team here at the Kelleher Lab at Indiana University Indianapolis.
These at-home assessments include several play-based activities that are designed to capture their skills and personality. We also ask your child to wear a vocalization recording vest and heart rate monitor so that we can learn more about how they are processing the world around them.
As part of this study, we will also visit in-person with a subset of families after their child’s final assessment. During these in-person visits, we will conduct developmental and behavioral testing so that we can learn how our online tools “line up” with assessments that are typically done in school and clinical settings. These in-person visits may occur in your home, or in a shared, private location like a conference hotel during a patient foundation meeting. Not all families will be asked to do these assessments; we will select families randomly, with some limitations related to geography and cost. Families are not required to complete the assessments if asked.
Families receive a brief report summarizing their child's strengths and data. All activities are completed 100% from home, and families are compensated up to $100 for completing each set of study activities, up to 4 times during the study.
What makes PANDABox different?
Many families of children with neurogenetic conditions live far from research centers or have difficulty traveling. Telehealth research allows families to participate from home, making studies more accessible. PANDABox helps bring the research lab to your home so we can learn more about child development while reducing travel, time, and cost barriers for families.
Many telehealth studies rely on simple observations, like video diaries or interviews over Zoom. PANDABox goes a step further, using special tools to collect more detailed information about development, such as how children look at things (eye tracking), how they vocalize (audio recordings), and how their bodies respond during activities (heart rate). These tools help researchers better understand small changes in development over time.
Who is eligible to participate?
We are recruiting parents and legal guardians with an infant (6-18 months) diagnosed with Angelman, Down, fragile X, Prader-Willi, and Williams syndromes, as well as infants with expected typical development. Interested in participating must live in the U.S. and be fluent in English or Spanish.
How do I get involved?
If you’re interested in learning more, please reach out to our team at [email protected]
The Primary Caregiver Administered Neurodevelopmental Assessment Box (PANDABox) is a novel telehealth-based platform that allows scientists to remotely monitor early clinical risk factors in rare neurogenetic conditions -- all without families needing to visit a lab.
Our Goal
This NIH-funded study observes the early development of children with neurogenetic conditions to better understand how their abilities and skills change over time. We are also interested in learning how to design better telehealth assessments that are accessible and helpful to families. If you choose to participate, we will ask you and your child to complete study activities such as online forms and smartphone-based surveys, phone interviews, and several at-home remote research assessments with our research team here at the Kelleher Lab at Indiana University Indianapolis.
These at-home assessments include several play-based activities that are designed to capture their skills and personality. We also ask your child to wear a vocalization recording vest and heart rate monitor so that we can learn more about how they are processing the world around them.
As part of this study, we will also visit in-person with a subset of families after their child’s final assessment. During these in-person visits, we will conduct developmental and behavioral testing so that we can learn how our online tools “line up” with assessments that are typically done in school and clinical settings. These in-person visits may occur in your home, or in a shared, private location like a conference hotel during a patient foundation meeting. Not all families will be asked to do these assessments; we will select families randomly, with some limitations related to geography and cost. Families are not required to complete the assessments if asked.
Families receive a brief report summarizing their child's strengths and data. All activities are completed 100% from home, and families are compensated up to $100 for completing each set of study activities, up to 4 times during the study.
What makes PANDABox different?
Many families of children with neurogenetic conditions live far from research centers or have difficulty traveling. Telehealth research allows families to participate from home, making studies more accessible. PANDABox helps bring the research lab to your home so we can learn more about child development while reducing travel, time, and cost barriers for families.
Many telehealth studies rely on simple observations, like video diaries or interviews over Zoom. PANDABox goes a step further, using special tools to collect more detailed information about development, such as how children look at things (eye tracking), how they vocalize (audio recordings), and how their bodies respond during activities (heart rate). These tools help researchers better understand small changes in development over time.
Who is eligible to participate?
We are recruiting parents and legal guardians with an infant (6-18 months) diagnosed with Angelman, Down, fragile X, Prader-Willi, and Williams syndromes, as well as infants with expected typical development. Interested in participating must live in the U.S. and be fluent in English or Spanish.
How do I get involved?
If you’re interested in learning more, please reach out to our team at [email protected]
