Frequently Asked Questions

Frequently Asked Questions

What is RI-CART?
Is RI-CART a hospital program?
Why is RI-CART necessary?
What is the “registry?”
How is confidentiality maintained?
How can I participate?
What should I expect during the initial appointment?
How does joining RI-CART benefit me?
My child is afraid of needles; can we still participate?
I’m not sure if my or my child’s condition is on the autism spectrum.

 

What is RI-CART?

RI-CART is a joint initiative of Bradley Hospital, Hasbro Children’s Hospital, Women & Infants Hospital and Brown University. It brings together Rhode Island families and individuals affected by Autism Spectrum Disorder (ASD) and related neurodevelopmental disorders with researchers, clinicians and educators, who are working to advance treatment and improve life for people on the spectrum.

Is RI-CART a hospital program?

While we’re based at Bradley Hospital, RI-CART was established thanks to generous support from The Simons FoundationThe Brown Institute for Brain Science and The Norman Prince Neurosciences Institute. We are a collaborative program that brings together those across Rhode Island with an interest in autism and other neurodevelopmental disorders. We have office hours at multiple locations throughout the state. 

Why is RI-CART necessary?

The number of people who are identified with ASD is on the rise. While we do not know the exact number of people affected by ASD, there may be more than 10,000 individuals with ASD in Rhode Island. Autism and ASD affects many in our in Rhode Island and neighboring communities.

The population of children with ASD and neurodevelopmental disorders is rapidly transitioning to adulthood and growing beyond school-based services. We need to offer better support to individuals by connecting them with appropriate vocationalprograms and housing, including independent, assisted, and group living programs.

Rhode Island holds the ingredients for a coordinated, interdisciplinary, geographically feasible system of research, support, education and care. No such comprehensive system exists anywhere in the United States today. Rhode Island is well positioned to become a model for programs nationwide.

In addition, with better coordination and an understanding of the picture of autism in Rhode Island, our community stands to capitalize on the substantial financial and other resources available. Federally, congress has mandated ASD research and appropriated funding; private foundations have also targeted ASD research.

What is the “registry?”

Research is the core of RI-CART. Our “registry” is a secure and anonymous research database that houses information shared with us by participants. We are working to enroll everyone in the state with ASD or neurodevelopmental disorders. By connecting families and individuals with ASD to researchers, we are making innovative research and a big picture understanding of those affected by ASD in Rhode Island possible.

By developing a clearer understanding of autism’s wide-reaching impact on those in and near Rhode Island, our community will be better positioned to attract funding and support for increased services statewide, as well as continued support for ongoing research.

How is confidentiality maintained?

Your (or your child’s) information is stored in a secure database and is not released to anyone without your consent. All records are stored via a number and not identified by name, with contact information stored separately. Contact details are accessible only to those on our team requiring this information to invite you to participate in other studies.

For example, if a study is focused on the weight and height of all children with autism between ages 10 and 15, the researcher will ask our database manager to find the names and telephone numbers of all children in that age range. Then a member of our team will contact you to ask if you would like for your child to participate in the study. Each study you or your child participates in requires its own written consent.

How can I participate?

We welcome your participation at whatever level is comfortable — from volunteering basic information about family characteristics to participating in clinical assessments and research projects and genetic research through blood or saliva samples.

When you sign up to get involved, a RI-CART team member will contact you to answer any questions you have and schedule an appointment for an assessment. Appointment times are flexible and offered at multiple locations throughout Rhode Island. Transportation is available upon request.

An enrollment appointment takes about two hours – a small amount of time to become a part of a community that has the potential to make a major impact in autism research. We can break the appointment into two if that is more comfortable for you or your child.

Once you have joined RI-CART, we may contact you to ask for your or your child’s participation in other studies. There are no obligations to fulfill. The choice to participate is yours every step of the way.

What should I expect during the initial appointment?

This approximately two hour appointment includes:

  • Completion of consent and other enrollment forms. Assistance is available ifneeded.
  • The Autism Diagnostic Observation Schedule (ADOS), a “gold standard”assessment of autism symptoms. *This no-cost evaluation includes anobservation of social behavior and interaction. The activities done during the ADOS are dependent on age and ability.
  • A blood draw or saliva sample may be obtained. We offer picture cards thatyou can use to help your child prepare.
  • We may ask for past medical records.

The appointment and all findings are confidential. However, you may request a written summary of the RI-CART assessment to share with your doctor or service provider.

*RI-CART does not diagnose, but provides ADOS assessment findings to participants to share with their physicians, schools and other providers.

How does joining RI-CART benefit me?

Along with being on the cutting edge of meaningful autism research, RI-CART is also a proponent of community building. You’ll join a community of individuals and families living with ASD, and be a part of only the second statewide autism research program nationwide.

When you register, you’ll receive:

  • The Autism Diagnostic Observation Schedule (ADOS) — the “gold standard” autism assessment.
  • A one-on-one call with a parent resource specialist from The Autism Project, a Rhode Island support organization, to help answer questions and learn about local resources.
  • Our resource guide that helps individuals and families of children with ASD navigate the medical, educational, and transitional supports available throughout the state.
  • Regular updates from RI-CART on upcoming studies and programs in which you can participate, as well as information on findings, resources and interventions from leading autism groups nationwide

My child is afraid of needles; can we still participate?

Absolutely. RI-CART staff has years of experience and we do our best to make your child comfortable. However, you may choose to decline to participate in specific parts of the research.

I’m not sure if my or my child’s condition is on the autism spectrum.

If you’re unclear about a diagnosis, you or your child may still enroll in the RI-CART registry. The registry assessment does not replace a complete clinical evaluation. Our resource specialist can provide you with information on local clinics that will help clarify the diagnosis.