We are NOT recruiting for this study! Thank you for your interest.
Welcome to Project WellCAST!
We know that caregivers of children with neurogenetic syndromes are under a lot of stress, and sometimes it can be hard to find providers who know about your loved one’s condition. We know it can be difficult to have to explain life as a caregiver to people who haven’t engaged with the syndrome community before. Project WellCAST is a research study that aims to fill these gaps by determining how to best provide appropriate, evidence-based support to rare disorder caregivers virtually.
Project WellCAST started in 2019 as a partnership between patient foundations, researchers, and clinicians who were interested in helping families of children with rare disorders access evidence-based treatments from home. Through Project WellCAST, we study how a variety of remotely-accessed resources and therapies might impact the lives of rare disorder caregivers.
What is Project WellCAST?
Project WellCAST is a NIH-funded clinical trial that aims to support caregiver well-being through supportive therapy, resources, and family friendly treatment. This research study includes up to 1,000 caregivers of children with a variety of neurogenetic syndromes associated with intellectual disability, including (but not limited to) Angelman syndrome, Down syndrome, Dup15q syndrome, Fragile X syndrome, Prader Willi syndrome, and Williams syndromes.
Our goal is to understand which supports and therapies are best suited to the needs of rare disorder caregivers. To accomplish this goal, participants will be assigned to receive a resource or evidence-based therapy that is commonly used in clinical settings. Supports formats vary and may include self-guided resources, peer coaching, individual therapies, or group therapies. The focus of support also differs; some programs focus on well-being as the caregiver, and others focus on helping caregivers to support their child's development. By trying many types of treatment across many different people, we want to learn which of these evidence-based supports are best for rare disorder caregivers with a variety of backgrounds, strengths, and needs.
Data collection is an important part of Project WellCAST. We collect data from participants across a variety of methods, including interviews, questionnaires, and smartphone-based "snapshot surveys" that measure participants' experiences as they go about their daily lives.
This project is funded by the National Institutes of Health
IRB-2022-1580, PI Dr. Bridgette Kelleher
Welcome to Project WellCAST!
We know that caregivers of children with neurogenetic syndromes are under a lot of stress, and sometimes it can be hard to find providers who know about your loved one’s condition. We know it can be difficult to have to explain life as a caregiver to people who haven’t engaged with the syndrome community before. Project WellCAST is a research study that aims to fill these gaps by determining how to best provide appropriate, evidence-based support to rare disorder caregivers virtually.
Project WellCAST started in 2019 as a partnership between patient foundations, researchers, and clinicians who were interested in helping families of children with rare disorders access evidence-based treatments from home. Through Project WellCAST, we study how a variety of remotely-accessed resources and therapies might impact the lives of rare disorder caregivers.
What is Project WellCAST?
Project WellCAST is a NIH-funded clinical trial that aims to support caregiver well-being through supportive therapy, resources, and family friendly treatment. This research study includes up to 1,000 caregivers of children with a variety of neurogenetic syndromes associated with intellectual disability, including (but not limited to) Angelman syndrome, Down syndrome, Dup15q syndrome, Fragile X syndrome, Prader Willi syndrome, and Williams syndromes.
Our goal is to understand which supports and therapies are best suited to the needs of rare disorder caregivers. To accomplish this goal, participants will be assigned to receive a resource or evidence-based therapy that is commonly used in clinical settings. Supports formats vary and may include self-guided resources, peer coaching, individual therapies, or group therapies. The focus of support also differs; some programs focus on well-being as the caregiver, and others focus on helping caregivers to support their child's development. By trying many types of treatment across many different people, we want to learn which of these evidence-based supports are best for rare disorder caregivers with a variety of backgrounds, strengths, and needs.
Data collection is an important part of Project WellCAST. We collect data from participants across a variety of methods, including interviews, questionnaires, and smartphone-based "snapshot surveys" that measure participants' experiences as they go about their daily lives.
This project is funded by the National Institutes of Health
IRB-2022-1580, PI Dr. Bridgette Kelleher
