Data Call Guidance

OMB# 0925-0682
Expiration: 12/31/2019

Guidance for Submitting and Coding 20XX 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 Autism Collaboration, Accountability, Research,
Education, and Support (CARES) Act and to inform their strategic planning activities, is asking agencies
and organizations that make significant contributions to ASD research to report how their 20XX
investments in ASD research correspond to the questions and research objectives of the 2016-2017 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 2016 ASD
research project data, please see the 2016 Autism Spectrum Disorder Research Portfolio Analysis
Report.

Overview:

The 2016-2017 IACC Strategic Plan is organized around seven critical questions faced by people and
families living with ASD:
• Question 1 (Diagnosis and Screening) – How Can I Recognize the Signs of ASD, and Why is
Early Detection So Important?
• Question 2 (Biology) – What Is the Biology Underlying ASD?
• Question 3 (Risk Factors) – What Causes ASD, and Can Disabling Aspects of ASD be
Prevented or Preempted?
• Question 4 (Treatments and Interventions) – Which Treatments and Interventions Will
Help?
• Question 5 (Services) – What Kinds of Services and Supports are Needed to Maximize
Quality of Life for People on the Autism Spectrum?
• Question 6 (Lifespan Issues) – How Can We Meet the Needs of People with ASD as They
Progress into and through Adulthood?
• Question 7 (Infrastructure and Surveillance) – How Do We Continue to Build, Expand, and
Enhance the Infrastructure System to Meet the Needs of the ASD Community?
The “20XX ASD Research Spreadsheet” accompanying this guidance contains a listing of projects
provided by your organization to the IACC for fiscal year 20XX, as well as space for you to include
projects that were newly funded in 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 or calendar year, whichever measure
is used by your organization). Please refer to the instructions below to fill out the 20XX ASD Research
spreadsheet. In deciding which projects to include in the spreadsheet, please list all projects that are
responsive to objectives in the 2016-2017 IACC Strategic Plan. In cases where potentially relevant
projects that were new in 20XX could be identified through websites or online databases, OARC prepopulated the spreadsheet with these projects and provided draft coding for agency review. Projects
may be added or deleted, and revised coding may be suggested as needed. If you have any questions
about whether a particular project should be included, please feel free to contact OARC for assistance.

OMB# 0925-0682
Expiration: 12/31/2019

Instructions:
1) Verify information for ongoing projects
All of the information for autism research projects that was provided by your organization for 20XX is
already in the spreadsheet. Please review this information for accuracy and fill in additional information
where required in the following columns:
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•

•
•
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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.”
Multi-Site (Yes/No): This is a new item added to our analyses to keep track of projects that
have more than one location where research activities are taking place. A project is considered
to be multi-site if a funded project supports research activities at multiple locations or the
project is one of several projects that make up a research network. Please pick “yes” or “no”
from the drop down menu for each project.
20XX Funding: Please fill in the 20XX funding amount; if the project remained active in 20XX
but did not receive funding please add $0 to the space.
New or Revised Weblink/New or revised Project description: Please fill out only if any
information has changed from 20XX.
20XX SP Question/20XX SP Objective: Please verify the coding of each project according to the
2016-2017 IACC Strategic Plan. The coding from 20XX is listed (in the “Previous SP Question
Code” and “Previous SP Objective Code” columns).
• If you agree with the Question and objective codes suggested by OARC, no further
action is required. If you do not agree with the pre-coding, you may suggest an
alternative Objective Code in the “20XX Objective Code (by Agency/Org)” column. For
your convenience, a Coding Reference Sheet is in the first tab of the spreadsheet and
lists all of the Strategic Plan objectives.
• NOTE: There is a new cross-cutting objective (CC1: Support research to understand the
underlying biology of sex differences in ASD, possible factors that may be contributing
to underdiagnosis, unique challenges that may be faced by girls/women on the autism
spectrum, and develop strategies for meeting the needs of this population). Projects
from any SP Question category can be coded to this Objective.
• If you would like to change the Question Code for a project, please use the drop down
boxes under the “20XX SP Question Code (By Agency/Org)” columns 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 Question coding.

Please Note: If other aspects of a project have changed since 20XX (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.

OMB# 0925-0682
Expiration: 12/31/2019

2) Provide information on projects that are new in 20XX
Also in the third 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. If you know of any projects that
are ongoing that were inadvertently left out of the 20XX 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:
• Project Status in 20XX: This has been auto-populated to “New”.
• Start/End Date: Please fill in the column for start date and the column for end date. If available,
use specific dates and not just the year.
• 20XX Funding: Please fill in the 20XX funding amount; if the project was active but did not
receive funding fill in $0.
• 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 20XX 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.
For some organizations with publicly available databases, OARC has pre-populated the spreadsheet
with new projects that began in 20XX that were identified from the database as potentially being
related to ASD research. We have made every attempt to include as much available data as possible
as well as provide suggested objective and question coding. Please review these projects and revise
the list as needed, supplementing any missing and/or incorrect data as well as adding additional
projects if necessary.
Coding
In previous years, OARC has requested that funders code each project according to the objectives in the
IACC Strategic Plan. To reduce the burden on agencies and organizations participating in the IACC
portfolio analysis data collection, the Office of Autism Research Coordination (OARC) is again offering
the option to have organizations send their new project listings to OARC to assign preliminary codes,
and then for OARC to return the coding to the organization for verification. Hopefully this second
option will reduce the effort required of organizations to determine which code best fits each project.
If you would like to take advantage of this opportunity, please follow the procedure below:
Instructions for obtaining pre-coding of new projects from OARC:
If you would like OARC to assign preliminary codes for new 20XX projects, then simply leave the 20XX
Strategic Plan (SP) Question and Objective Code columns blank and return the spreadsheet with a note

OMB# 0925-0682
Expiration: 12/31/2019

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.
Instructions for organizations that wish to do the preliminary coding of their own projects:
If, instead, your organization would prefer to assign the codes, then you may use the drop-down boxes
in the 20XX SP Question and Objective Code (by Agency/Org) 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). 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) Provide information regarding other projects if applicable
If you are aware of additional projects funded by your organization that may address a broader scientific
scope (e.g., that may include autism but are not limited to autism, such as projects pertaining to
multiple disabilities or disorders) but still have relevance to autism or the IACC Strategic Plan for Autism
Spectrum Disorder, please provide the project information in the “Other Projects” tab. These projects
will not be included in the autism research project listing for your agency or organization and their
funding will not be included in your agency’s or organization's total for autism spending, but summary
information about these projects may be made available to the IACC for their information and to the
public via the IACC Portfolio Analysis Report, with the goal of informing the community of additional
projects that may have relevance to autism research.

Send your completed ASD Research Spreadsheet to [email protected]. Any questions
may also be directed to this e-mail address, and one of the OARC staff will follow up.