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• Autism Registry Brochure
• Folleto del registro de autismo en espa帽ol

What is the 黑料网 Autism Research Registry?

• The Autism Research Registry is a confidential database of people with a confirmed diagnosis of autism spectrum disorder (ASD) who want to be contacted about our research studies. If you join the Research Registry, you will be contacted about studies you might be interested in joining. You will also receive updates about the latest advancements in research at the CIDD.

Who Can Join the Autism Registry?

• Children and adults who have been diagnosed with an ASD (autism, Asperger’s, or PDD-NOS) and live in North Carolina are eligible to join the 黑料网 Autism Research Registry.

What Happens After I Join?

• You will receive referrals by mail when you or your child/dependent are eligible for studies. You do not have to join a study that we tell you about. You can also let us know how much or how little you would like to be contacted about study opportunities.

What Kind of Research Is Being Conducted at 黑料网?

• Autism research at 黑料网 covers a wide range of topics, such as genetics, neurology, how autism occurs and why, early identification, the development of skills and behaviors, siblings and families, and behavioral and medical intervention. For some studies, you may need to travel. For others, you can participate over the phone or the internet. All studies are reviewed and approved by the Committee for the Protection of the Rights of Human Subjects Institutional Review Board.

For current studies and information about who to contact visit our

How Can I Join the Autism Registry?

You can enroll online. Click the link below that applies to you to fill out consent and registration forms through our secure portal.

If you prefer to enroll by mail, you can request paper versions of the forms. Email Kelly.real@cidd.unc.edu or call us toll-free at (866) 744-7879.

What is the Fragile X Research Registry?

• The Fragile X Registry is a secure database of individuals and families across the United States who want to be notified about fragile X research studies. It is a confidential, convenient way for individuals and families to connect with studies and move research forward鈥攖here is no cost or obligation.

Who Can Join the Fragile X Registry?

• Children and adults with fragile X and fragile X-associated disorders may join. The Registry is for individuals with:
  • Fragile X syndrome – full mutation or mosaic
  • Fragile X premutation (carrier)
  • Fragile X-associated primary ovarian insufficiency (FXPOI)
  • Fragile X-associated tremor/ataxia syndrome (FXTAS)
  • Fragile X-associated neuropsychiatric disorders (FXAND)

What Happens After I Join?

• You will receive referrals by mail when you or your child/dependent are eligible for studies. You do not have to join a study that we tell you about. You can also let us know how much or how little you would like to be contacted about study opportunities.

What Kind of Fragile X Research Is Being Conducted at 黑料网?

• Fragile X research at 黑料网 covers a wide range of topics, such as brain development, communication and social skills, behavioral and cognitive characteristics, clinical trials, and family support and adaptation. For some studies, you may need to travel. You may be asked to complete surveys, give a blood or saliva sample, some may involve completion of standardized tests, and some may involve having an MRI. For others, you can participate over the phone or the internet. You will receive information describing in detail what the study procedures are. All studies are reviewed and approved by the Committee for the Protection of the Rights of Human Subjects Institutional Review Board.

How Can I Join the Fragile X Registry?

You can enroll in the following ways:

• Email: Kelly.real@cidd.unc.edu
• Call us toll-free at (866) 744-7879.

When joining the Fragile X Registry, you will provide basic contact and demographic information about you, your child, and family. We also ask questions about genetic diagnoses and medical conditions that might affect participation in a study. The information is only used to determine whether you or your family are eligible for research studies. It is not released.

Information in the Registry is stored in a secure and protected database and handled with strict confidentiality. Research is voluntary. You do not have to participate. You can withdraw from the Registry at any time by simply contacting us.

Explore below to learn more about the Intellectual and Developmental Disorders Registry. You can also download our Registry Brochure to learn more:

CIDD Registry Brochure (English)

What is the Intellectual and Developmental Disorders Registry?

• The Intellectual and Developmental Disorders Registry is a confidential database of families and individuals across the country who have been diagnosed with any type of developmental or intellectual disorder. With this registry, we are able to match qualified participants with research studies. If you join the Research Registry, you will be contacted about studies you might be interested in joining.
• This registry includes individuals with specific syndromes such as Angelman, Down, Prader-Willi, Rett, Turner, Williams, and others. It also includes individuals with developmental delay, ADHD, communication delay, and intellectual disabilities.

Who Can Join the Intellectual and Developmental Disorders Registry?

• Children and adults who have been diagnosed with an intellectual or developmental disability and live in the United States can join the Carolina Institute Research Registry.

What Happens After I Join?

• You will receive referrals by mail when you or your child/dependent are eligible for studies. You do not have to join a study that we tell you about. You can also let us know how much or how little you would like to be contacted about study opportunities.

What Kind of Research Is Being Conducted at 黑料网?

• Research on developmental disabilities at 黑料网 covers a wide range of topics, such as genetics, neurology, how autism occurs and why, early identification, the development of skills and behaviors, siblings and families, and behavioral and medical intervention. For some studies, you may need to travel. For others, you can participate over the phone or the internet. All studies are reviewed and approved by the Committee for the Protection of the Rights of Human Subjects Institutional Review Board

How Can I Join the Registry?

You can enroll online. Click the link below that applies to you to fill out consent and registration forms through our secure portal.

If you prefer to enroll by mail, you can request paper versions of the forms. Email Kelly.real@cidd.unc.edu or call us toll-free at (866) 744-7879.

The Child Development Registry is a Triangle-area registry (NC counties: Wake, Durham, Chatham, Orange, and Alamance) of typically developing babies and children.

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Explore below to learn more about the Child Development Research Registry.

What is the Child Development Research Registry?

• The Child Development Research Registry is a confidential database of parents who want to be contacted about research studies for their child (under 18 years of age). If you join the Child Development Research Registry, you will be contacted about studies you might be interested in joining. Parents in the Triangle region of North Carolina (Wake, Durham, Chatham, Orange, and Alamance counties) are invited to enroll their babies and typically developing children in this registry.

What kinds of research projects are available?

• There are many kinds of research projects available. Participation might involve a telephone interview, completing questionnaires, a visit to your home, or travel to a child development research laboratory in or near Chapel Hill. Interviews and questionnaires could address aspects of your child鈥檚 personality, health, and behavior.

What might my child do while in a study?

• Study or laboratory visits usually involve enjoyable activities like having your child looking at pictures, solve simple problems, or play with toys or other children. Parents are always provided with a full description of each study’s purpose and participation requirements and the benefit or compensation (if offered). When the study is complete, parents are provided with a summary of the findings.

What happens when the study is finished?

• The data that we gather allow us to answer important questions about early development. These data will be used for research purposes only and will never identify you or your child. Our findings have been published in journals and the popular press and have had an impact on theories of child development, the advice that professionals offer parents, and public policy affecting children. The success of this work depends upon your willingness to participate.

What are our rights as Registry participants? How will you protect our privacy?

• Parents do not have to enroll in any of our studies and may withdraw from the Registry at any time. This will not affect your participation in any 黑料网-affiliated program or services.
  • All research on human volunteers is reviewed by a committee that works to protect your rights and welfare. If you have questions or concerns about your rights as a research participant, you may contact, anonymously if you wish, the Institutional Review Board at 919-966-3113 or by email at鈥疘RB_subjects@unc.edu.
• Research is an important part of the mission of the University of North Carolina at Chapel Hill. Thank you for considering supporting our efforts by joining the Child Development Research Registry. With your help, we can continue our efforts to understand the world of the child and develop interventions to help children prosper.

How do I enroll in the Child Development Research Registry?