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AUCD Community Inclusion

AUCD’s Community Inclusion Team supports the University Centers for Excellence in Developmental Disabilities (UCEDD) Network in partnership with the Administration for Community Living.

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AUCD Maternal and Child Health Engagement

AUCD’s Maternal and Child Health Engagement supports the Autism CARES Programs, including LEND and DBP Programs.

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AUCD Public Health

AUCD’s Public Health Team works to create health promotion and public health efforts that include people with disabilities.

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AUCD Emerging Leaders Community

AUCD Emerging Leaders are a part of a community that includes trainees, early career professionals, self-advocates, and family members from AUCD member Centers and Programs.

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Project

LEND: Fragile X Clinical and Research Consortium (FXCRC) Fragile X Online Registry With Accessible Research Database (FORWARD) project.

Center:

MN-Institute on Community Integration, UCEDD/LEND

Fiscal Year:

2015

Contact Information:

Amy Esler
[email protected]
612-626-6777

Project Description:

CDC supports the Fragile X Clinical and Research Consortium. The consortium is a group of more than 25 fragile X clinics across the United States. These clinics collect information in a registry to paint a picture of the full scope of FXS. The registry allows CDC scientists and research partners to gather information on a large enough group of people with FXS to make the research scientifically valid. The registry also serves as a centralized database for individuals who want to be contacted for other FXS research projects. Some examples of information in the registry are age at diagnosis, treatment and services provided, and the range of behavioral and intellectual challenges faced by individuals with FXS. Researchers, therapists, doctors, and nurses can use information from the registry to develop better treatments and educational programs for individuals with FXS.

Keyword(s):

Core Function(s):

Training Trainees, Performing Research or Evaluation

Area of Emphasis

Other - Leadership, Other

Target Audience:

Students/Trainees (long or intermediate trainees), Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers, General Public

Unserved or Under-served Populations:

Specific Groups

Primary Target Audience Geographic Descriptor:

National

Funding Source:

COVID-19 Related Data:

N/A

1100 Wayne Avenue, Suite 1000 Silver Spring, MD 20910

Mailing address:
PO Box 8787
Silver Spring, MD 20907-8787