Missouri Autism Project Registry

The goal of the Missouri Autism Project Registry is to provide a comprehensive information resource that will direct Missouri state policies and service decisions; provide families and health care providers with supportive, relevant autism information; and facilitate research that will improve the outcomes of Missouri children and adults with autism. The Registry will unite the autism-related resources of Missouri state agencies, health care providers and researchers at Missouri universities, private service agencies, and families of children with autistic disorders.  The University of Missouri-Columbia (co-PIs: Farmer, Miles & Mitchell) was awarded a 1 year planning grant in June, 2004 to facilitate the efforts of a statewide development team in designing the registry. 

Advantages of the MAP Registry

For Children and Families (via web site)

1. Source of autism diagnostic and treatment information

2. Access to Missouri available services - user friendly

Medical, educational, case management, parent support groups, financial etc.

Location of services maps (~ Gene Clinics)

3. Access to Missouri research projects, including participation opportunities

4. Opportunity to provide feedback to shape the Missouri Autism Registry project

5. Access to aggregate de-identified Missouri data about autism in the state

For the Department of Mental Health Autism Project (internal data)

1. Missouri specific autism data - both aggregate de-identified data & identified data

a. Prevalence by county and state - numbers, ages, schools

b. Current and projected use and need for services by county and state

c. Outcome/longitudinal data

2. Other specific questions: age at diagnosis, % of children using which services by county, age, etc

For Research Scientists (data download with DMH, IRB and parent consents)

1. Way to access subjects for research projects

2. Data on prevalence, diagnoses, services, outcome, birth and health data, including NB screening and
    immunizations

3. Promote collaboration among Missouri researchers to increase knowledge & obtain federal funding
    (e.g., may obtain information about other registered projects the subject is involved in, with parent permission)

For Health Care Providers (via web site)

1. Diagnostic criteria and diagnostic tools for early identification

2. Resources - by county, region and state

3. Basic medical and treatment references

4. Links to national resources for health care providers

For Educators (via web site)

1.      Missouri specific autism data by county and state

2.      Information about medical and behavioral treatment resources across the state

3.      Links to national resources for educators

Logistics of MAP Registry

The logistics of the MAP Registry are depicted in the visual graphic attached.  The point of entry would be through a website managed by DMH/MRDD.  The website would provide user friendly access to autism information and services in Missouri for parents, consumers, and health care providers. In addition, there would be a Research page linked to CIMOR that would allow the parent/guardian to provide a standard set of data about their child (encrypted for privacy protection) and to consent to be contacted about research projects.   There may also be descriptions of specific projects going on in the state to inform parents of types of research activities in Missouri.

Central Registry as part of CIMOR – a key component

1. Provides and controls the core/master identifier for each individual with ASD in the database

2. Manages/approves researcher access to the MAP Registry database (using a Scientific Advisory Board?)

Family and Health Provider pages on the website might include information related to the following:

"I want a MAP case manager to contact me"

"I need a doctor who knows about autism"

"I need a diagnosis"

"I need help with behaviors"

"I need help with medications"

"I want to help with autism research"

"I need help with education program"

“I need to know how to screen for autism”

 Help index - Project Access

 Chat Room ?

Research pages on the website:

-         instructions for researchers about how to gain access to registry data (e.g., will require prior approval through
  DMH mechanism, local IRB approval of research project, and parent consents for any identified data)

-         descriptions of other research projects in the state

-         summaries of findings from completed projects

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