Autism Spectrum Disorder (ASD) Research Funders - International Private

OMB# 0925-XXXX

Expiration:XX/XXXX

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Guidance for Submitting and Coding Autism Research Funding Data

The Interagency Autism Coordinating Committee (IACC), in order to perform the monitoring of autism spectrum disorder (ASD) activities mandated by the Combating Autism Act and to inform the next annual update of the Strategic Plan for ASD Research, is asking agencies and organizations that make significant contributions to ASD research to report how their investments in ASD research correspond to the questions and research objectives of the 2011 IACC Strategic Plan. This will greatly help the IACC to understand the current funding landscape and identify areas of progress, opportunity and need. To view the analysis that was conducted using the 2010 collection of ASD research project data, please see the 2010 Autism Spectrum Disorder Research Portfolio Analysis Report.

Overview:

The 2011 IACC Strategic Plan is organized around seven critical questions faced by people and families living with ASD:

Question 1 (Diagnosis) – When should I be concerned?

Question 2 (Biology) – How can I understand what is happening?

Question 3 (Risk Factors) – What caused this to happen and can it be prevented?

Question 4 (Treatments and Interventions) – Which treatments and interventions will help?

Question 5 (Services) – Where can I turn for services?

Question 6 (Lifespan Issues) – What does the future hold, particularly for adults?

Question 7 (Infrastructure and Surveillance) – What other infrastructure and surveillance needs must be met?

The “ASD Research Spreadsheet” accompanying this guidance contains a listing of projects provided by your organization (if applicable) to the IACC last year, as well as space for you to include projects that were newly funded this year (20XX). On behalf of the IACC, the Office of Autism Research Coordination (OARC) is requesting information on your organization’s 20XX projects. This would include all ongoing and newly funded projects from 20XX (either fiscal year 20XX or calendar year 20XX, whichever measure is used by your organization). Please refer to the instructions below to fill out the ASD Research spreadsheet.

In deciding which projects to include in the spreadsheet, please list all projects that are responsive to objectives in the 2011 IACC Strategic Plan.

Instructions:

1) Verify information for ongoing projects

All of the information for autism research projects that was provided by your organization last year is already in the spreadsheet in the second tab labeled “20XX ASD Projects.” Please review this information for accuracy and fill in additional information where required in the following columns:

• Project Status in 20XX: If a project had any funding or any project activity at any time in 20XX, then please use the drop-down box to list the project as “Ongoing.” If there was no funding or project activity in 20XX, then please use the drop-down box to list the project as “Terminated.”

• Award Period: Please verify the year or years that funding will be awarded for this project. For example, if a grant was awarded in 2008 and is set to continue through 2012, then the “Award Period” would be 2008-2012.

• New or Revised Weblink/New or revised Project description: Please fill out only if any information has changed from last year.

• 20XX Funding: Please fill in the 20XX funding amount (if applicable).

• 2011 PA Question/2011 PA Objective: Please also verify the coding of each project according to the 2011 IACC Strategic Plan. The coding from the previous year is listed (in the “Previous SP Question Code” and “Previous SP Objective Code” columns) and has been carried over into the columns for the 20XX Portfolio Analysis. If you feel that the coding should be the same, then no action is required on your part. If you would like to change the code for a project, please use the drop down boxes to select first the Question and then the Objective that you think best describes the project according to the IACC Strategic Plan. Please include a note in the “Comments” column to explain the reason(s) for the change in coding. For your convenience, a Coding Reference Sheet is in the first tab of the spreadsheet and lists all of the Strategic Plan objectives.

Please Note: If other aspects of a project have changed since last year (e.g., PI, Project Title, Institution), please do not alter the information in these cells; instead, provide revised data in the “Comments” column in the spreadsheet. Please ignore any cells that are blacked out; you do not need to put any information in that column.

2) Provide information on projects that are new in 20XX

Also in the second tab, labeled “20XX ASD Projects,” is space to list all the new projects funded by your organization in 20XX. This new project data should be entered in rows below the ongoing project data. The beginning of this section for data entry can be found by looking for rows that have a yellow highlighted cell on the far left. These cells indicate that all new project information should be entered into the adjacent cells to the right. Please fill in the missing information in the green cells for each project. The Project Status in 20XX (“New”) has been filled in for you in Column D. If you know of any projects that are ongoing that were inadvertently left out of last year’s Data Call, please provide them in these rows as well, and choose “Ongoing” from the drop-down options for Project Status.

Please fill in all of the required columns to the best of your ability according to the instructions above, including:

• Award Period

• 20XX Funding

• Project Description and Weblink: A short, accurate project description (a few sentences is enough) or a weblink to a site where a project description can be found is very useful for verifying coding of the projects, as well as helping readers understand the activities included in the projects. If no project description or weblink is available, please type “Project description/weblink unavailable.”

Columns where previous information does not exist for new projects, such as last year’s funding, previous project descriptions or last year’s codes, have been blacked out. You need not put any information into these cells for the new projects.

In previous years, we have requested that funders code each project according to the objectives in the IACC Strategic Plan. While this remains a crucial part of this analysis, we have received feedback from some funders requesting more assistance with this process to make it less burdensome. To address this, the Office of Autism Research Coordination (OARC) is offering the option to have our office assign preliminary codes to organizations’ new projects (once the data are received) and then send them back to the organization for verification. Hopefully this process would allow organizations to reduce the effort required to determine which code best fits each project. If you would like to take advantage of this opportunity, please follow the procedure below.

If you would like OARC to assign preliminary codes for new 20XX projects, then simply leave the 2011 Strategic Plan (SP) Question and Objective Code columns blank and return the spreadsheet with a note stating that you would like the office to assign codes. Once OARC has assigned preliminary codes, the office will return the spreadsheet to you for coding verification. Once you receive the list of projects with preliminary coding added, you may review the coding and determine whether you would like to keep the preliminary codes or suggest alternate codes.

If, instead, your organization would prefer to assign the codes, then you may use the drop-down boxes in the 2011 SP Question and Objective Code columns to assign first the Question and then the Objective that best describes each project according to the Strategic Plan (the assignments must be made in that order). If a project is not specific to Plan objectives, then you may select that option from the drop-down menu. A project may also fit within a question but not a specific objective, in which case you can select the appropriate Question followed by “Not specific to Question X objectives” in the Objective column.

3) Please submit completed ASD Research Spreadsheet by XXXXX.

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