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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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Format should be in the following format: Activity Code, Institute Abbreviation, and Serial Number. Grant Type, Support Year, and Suffix should be excluded. For example, grant 1R01MH123456-01A1 should be entered R01MH123456

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General

Title, investigators, and Collection Description may be edited along with the Collection Phase. For Collection Phase, the options Pre-enrollment, Enrollment, and Completed can be chosen allowing the Collection Owner to indicate the stage of data collection.

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For clinical trials, the option to link to the clinical trial in clinicaltrials.gov is optionally provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Autism Spectrum Disorder: Birth Cohort 1976-2000, Epidemiology and Adult
Slavica Katusic 
Autism Spectrum Disorders (ASDs) are lifelong neurodevelopmental conditions with mostly unknown etiology that have a huge impact on affected individuals and their families, and are a major public health concern. This proposal, Autism Spectrum Disorder: Birth Cohort 1976-2000, Epidemiology and Adult Status, in response to NIH Funding Opportunity Announcement (PA-10-158) describes an epidemiologic, population-based, large birth cohort study of ASDs. Significant gaps exist in the knowledge of ASD incidence and its possible risingtrend. Detailed characterization (phenotype) of ASD incident cases and ASD subtypes [Autistic Disorder (AD),Aspergers Syndrome (AS) and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS] issparse, and potential risk factors (etiologies) are still unknown. Knowledge about adult outcomes of incident ASD cases identified in childhood is almost non-existent. ASD-associated medical costs are high, yet information to improve cost-effective medical management is lacking. A unique set of circumstances, including an already established population-based birth cohort of all children born 1976-2000 to mothers residing in Olmsted County, MN (N=43,934), access to complete, detailed school records for each child in the birth cohort (Independent School District ISD #535 41 public, private, home schooled), access to detailed medical records for every child in the birth cohort (Rochester Epidemiology Project-REP; NIH-AR30582), and theOlmsted County Healthcare Expenditure and Utilization Database (OCHEUD) provide the infrastructure to enable the successful completion of this project. This rigorous epidemiologic study involves an experienced multi-disciplinary research team, confirmation of the availability of documented behavioral symptoms of ASD from 1976 forward, with development of a detailed dictionary of descriptive phrases abstracted from medical/school records congruent with DSM-IV-TR criteria (pilot data) and a unique population-based birth cohort. [To help control for changes in special education laws and DSM criteria] this proposal will implement asystematic page by page review of medical and school records of all potential ASD cases regardless of initial school and medical classification and will apply the same uniform research criteria for ASD incident caseidentification (including DSM-IV-TR criteria), during the 37 year study period. We will study the putative rise inincidence of ASD over 37 years, the possible role of certain risk factors on any incidence trend of ASD over time, the shared risk hypothesis by estimating the interaction between perinatal risk factors and family history(parents, siblings) of psychiatric disorders, assessing adult ASD current status and outcomes and costeffective medical management analyses. The knowledge achieved through this combined retrospective and prospective epidemiologic approach will substantially advance scientific/clinical knowledge about ASD.
NDAR
Enrolling
Shared
$3,026,835.00
0
315
467
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NIH - Extramural None


R01MH093522-01 Autism Spectrum Disorder: Birth Cohort 1976-2000, Epidemiology and Adult Status 02/20/2012 01/31/2018 315 467 MAYO CLINIC ROCHESTER $3,026,835.00

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Experiments

To create a new Omics, eye tracking, fMRI, or EEG experiment, press the "+ New Experiment" button. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the metadata defined in the experiments interface.

IDNameCreated DateStatusType
No records found.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Shared Data

Data structures with the number of subjects submitted and shared are provided.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Publications

Publications relevant to NDAR data are listed below. Most displayed publications have been associated with the grant within Pubmed. Use the "+ New Publication" button to add new publications. Publications relevant/not relevant to data expected are categorized. Relevant publications are then linked to the underlying data by selecting the Create Study link. Study provides the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results are expected in this way.

PubMed IDStudyTitleJournalAuthorsDateStatus
27266369Create StudyRole of individual-housing-based socioeconomic status measure in relation to smoking status among late adolescents with asthma.Annals of epidemiologyWi CI, Gauger J, Bachman M, Rand-Weaver J, Krusemark E, Ryu E, King KS, Katusic SK, Juhn YJJuly 2016Not Determined
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Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
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Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info iconApproved
Structure not yet defined

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Associated Studies

Studies that have been defined using data from a Collection are important criteria to determine the value of data shared. The number of subjects column displays the counts from this Collection that are included in a Study, out of the total number of subjects in that study. The Data Use column represents whether or not the study is a primary analysis of the data or a secondary analysis. State indicates whether the study is private or shared with the research community.

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