Form 1 RESEARCH NETWORK QUESTIONNAIRE

Combating Autism Act Initiative Evaluation

ATTACHMENT F Research Network Questionnaire

RESEARCH NETWORK QUESTIONNAIRE

OMB: 0915-0335

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OMB Control Number 0915-0335

Expiration Date XX/XX/201X





ATTACHMENT F:

RESEARCH NETWORK QUESTIONNAIRE









Public Burden Statement:  An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number.  The OMB control number for this project is 0915-0335. Public reporting burden for this collection of information is estimated to average 3 hours per response, including the time for reviewing instructions, searching existing data sources, and completing and reviewing the collection of information. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to HRSA Reports Clearance Officer, 5600 Fishers Lane, Room 10‑29, Rockville, MD, Maryland, 20857




Combating Autism Act Initiative (CAAI)

Autism Intervention Research Networks


Data Collection Form


AIR-B/AIR_P: 2-Year Reporting Period: September 1, 2011 – August 31, 2013

DBPNet: 3 Year Reporting Period: September 1, 2010 – August 31, 2013


  1. CONDUCT RESEARCH ON ASD INTERVENTIONS


In the following table, please document your Network’s progress in completing the originally proposed studies, developing and implementing additional studies, as well as in obtaining leveraged funding during this 2 (or 3 in the case of DBP net) year period.


Activity

Total Number


Research Proposals Developed

Number of research proposals developed/supported with Network funding


Number of research proposals developed/supported with leveraged funding



Status of Research Protocols supported with CAAI Network funding ONLY (not leveraged funding)

A: Number of studies approved by the Network, but not yet started


B: Number of studies in progress


C: Number of studies completed


Total number of studies supported with Network funding (A + B + C)




Status of Research Protocols supported with Leveraged funding


A: Number of studies funded, but not yet started


B: Number of studies in progress


C: Number of studies completed


Total leveraged studies funded (A + B + C)



Sustainability of Projects

Number of studies with mix of CAAI funding and funding from another source*


Dollar amount of outside funding obtained as a consequence of the CAAI funds

(e.g., leveraged funding)


*Note: This is for informational purposes and is not a program requirement. Please put N/A if not applicable.

Below, we provide a list of the studies conducted using only CAAI funding and leveraged funding. Please:

  1. Review and correct any information listed.

  2. Add the number of participants [families or children] recruited or anticipated to be recruited for each study [last column].

  3. Add any new studies to the blank rows at the bottom of the table.

  4. Include all studies active during or since 2011 (or 2010 for DBPNet).






Note: Please make sure the studies listed in the table below match the number of studies reported in the table above.


Study Title

Goal of Study

Current Status (e.g. Proposal under development, study start up phase, in recruitment, recruitment ended still collecting data, all data collected/still undergoing analyses )

Anticipated Final Products

Number of Participants [Families or Children] Recruited*

1.







2.







3.







4.







5.







6.







7.







* Note: If recruitment efforts are not completed, insert PLANNED number, otherwise input ACTUAL number.

Please review the following information and add/remove appropriate checks to the table. Please add a row for each study not listed.


Note: Check all that apply. Please make sure the list of studies matches those listed on P.2. Please check only if the study includes more than 30% of enrolled participants in the population group. If the study is not done recruiting, then check if the anticipated number of enrolled participants is over 30%. Consider each population group separately.



Study Title


UNDERSERVED POPULATION

Hispanic

African-American

Low-Income

Rural

Other Underserved Population Group

1








2








3








4







5








6









Please detail your efforts to serve minority and underserved populations and to engage with families.



Reducing Barriers for Families and Underserved Populations

Number of Studies

Minority and Underserved Populations

Number of studies that are responsive to the cultural and linguistic needs of special populations


Number of studies listed in above table having one or more underserved category as over 30% of study participants.


Engage in Family-Centered Activities

Number of studies where parents have been consulted over the course of the study, such as in the study design, the design of the instruments, or the interpretation of the results


Number of parents involved in study process



Please review the following information and add/remove appropriate checks to the table. Please add a row for each study not listed.


Note: Check all that apply. Please make sure the list of studies matches those listed on P.2


Study Title


TOPIC OF STUDY




GI Issues

Sleep


Diet/

Nutrition

Social Skills; Engagement/ Communication

Anxiety/ Depression

Adult Transi-tion

Standardizing Care Practices

Disparities to access and early intervention

Clinical Practice Variation

Other Topic

HOME or FAMILY BASED

SCHOOL or COMMUNITY BASED

1














2














3














4














5














6















In the following table please document your Network’s progress in developing publications and scientific conference presentations during this 2 year period.


Publication Activities

Total Number


Publications in Process


A: Number of manuscripts in preparation


B: Number of manuscripts submitted


C: Number of manuscripts accepted


D. Number of manuscripts published


Total publications (A + B + C + D)



Scientific Conference Presentations


Number of scientific conference presentations made (Note: include each presentation made, even if it was the same presentation given several times; Exclude grand rounds presentations)



Below, we provide a list of the papers published, in preparation, submitted or accepted. Please update the citations and list any new papers.

Note: Please make sure this list matches the numbers reported in the above table.

Research Network

Manuscripts

Published manuscripts:



1.

2.

3.

4.

5.


Manuscripts Accepted for Publication (But not yet published):


1.

2.

3.

4.

5.



Manuscripts Submitted:



1.

2.

3.

4.

5.


Manuscripts in Preparation:



1.

2.

3.

4.

5.


In the following table, please document the subject of each of the publications listed above.


Note: Please count each manuscript only once, even if it covers multiple topics.


Publications


Subject of Publication


TOTAL

NUMBER

Intervention Research

Improving Care Practices

Measures/ Tools

Guidelines

Other

Number of manuscripts published, prepared, submitted, or accepted











  1. DEVELOP AND VALIDATE TOOLS FOR ASD SCREENING/INTERVENTION

Note: This Section is for AIR-P and AIR-B only.


In the following table, please list the number of tools, and/or any outcome measures used for the tools that were developed or finalized during this 2 year period.



Total Measures and Tools

Total number of measures/tools developed or validated


Number of measures/tools piloted in care or community settings (if applicable)


Number of tools finalized (made available to public or published)


Number of tools endorsed by other organizations/associations beyond the network (e.g. American Academy of Pediatrics) (if applicable)




Below, please update and provide a list of tools and outcome measures developed, validated, piloted, or released during this 2 year period. Please:

  1. Review and correct any information listed.

  2. Update the last column on dissemination plans or progress for these tools.

  3. Add any new tools to the blank rows at the bottom of the table.

  4. Include only those tools for which activity occurred during or since 2011.


Note: Please make sure this list matches the numbers reported in the above table.


Tool Name

Description

Current Status (e.g. Under development, In Pilot-Testing, Finalized , etc.)

Anticipated Final Products (if applicable)

Dissemination Plans/ Progress

1






2






3






4






5






6






7






8












  1. DEVELOP GUIDELINES FOR ASD INTERVENTIONS

Note: This Section is for AIR-P and AIR-B only.


In the following table, please list the number of guidelines that were developed or finalized during this 2 year period.



Total Guidelines

Total number of guidelines developed, drafted, or updated


Number of guidelines piloted in care or community settings (if applicable)


Number of guidelines finalized


a. Number of guidelines released to providers and the public (for instance, posted on the website)


b. Number of guidelines published in journals and peer reviewed publications


c. Both


Number of guidelines adopted/endorsed by other organizations/associations beyond the network (if applicable)



In the table below, we provide a list of the guidelines developed, piloted or released during this 2-year period. Please:

  1. Review and correct any information listed.

  2. Update the last column on dissemination plans or progress for these tools.

  3. Add any new guidelines to the blank rows at the bottom of the table.

  4. Include only those guidelines for which activity occurred during or since 2011.


Note: Please make sure this list matches the numbers reported in the above table.


Guideline or Algorithm Name

Description

Current Status (e.g. Under development, In Pilot-Testing, Finalized etc.)

Anticipated Final Products (if applicable)

Dissemination Plans/ Progress

1






2






3






4






5






6






7






8








Guideline or Algorithm N

  1. DISSEMINATE INFORMATION


Please summarize your Network’s activities directed to disseminating information below.


Note: these activities should be related to the CAAI funding or to the funded research.

Dissemination Activities

During 3 Year Grant Period

Total Number


Materials Developed and Disseminated

Number of print or electronic materials (e.g., briefs, articles, newsletters or informational materials) developed, excluding study publications and conference presentations


Number of “hits” on Network Web sites



Health or School Professional Training Sessions (e.g., grand rounds, medical teleconferences and others)

Number of grand rounds, training sessions and medical teleconferences geared toward health or school professionals


Number of health or school professionals reached



Parent Training Sessions (e.g., toward parents, parent volunteers and family advocates)

Number of parent training sessions


Number of parents trained



Community Outreach Sessions Conducted (e.g. presentations, lectures or seminars for the public)

Number of community outreach sessions


Number of individuals reached through community outreach sessions




Please list all major collaborations with other CAAI grantees in the last 2 years and describe the activity.


Collaboration Project Title

Primary Target Audience

Nature of Collaboration


1. Other CAAI grantees

2. Health Care Providers

3. Schools

4. Associations

5. Families

6. Individuals With Autism


1




2




3




4




5




6




7




8







  1. DEVELOP NEW INVESTIGATORS


In the following table, please document your Network’s progress in developing and mentoring new investigators during this 2 year period.


Activity

Total Number

Researchers Trained


Number of new investigators mentored or developed in the ASD/DD field (please include efforts to support small research projects from junior investigators, webinars targeting new investigators, new investigators serving as co-authors, and graduate students and/or postdoctoral fellows on projects)




  1. PROMOTE IMPLEMENTATION OF PRACTICES/ IMPROVE CARE


Please list your efforts to transfer network findings on the following, as applicable to your network: interventions, guidelines, tools and systems management approaches into practice settings and communities to promote implementation of practices.


Activity

Number of Activities

Activities designed to promote implementation of practices


Number of care plans developed and implemented by providers? [if applicable]



Number of tools and/or algorithms implemented in specific community settings such as health, schools, etc. [if applicable]


Number of locations where successful implementation occurred [if applicable]



Implementation of validated outcome measure at Network sites





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