Frequently Asked Questions

What is the "research package"?

The research package consists of documents and materials that facilitate research teams in launching their study. For example, IRB templates, consent forms, and REDCap-compatible assessments could all be included in the research package. For more information, please contact us at icr@mednet.ucla.edu

Who will manage the REDCap database for my study?

UCLA creates and maintains the REDCap projects for all studies that participate in ICR.

Will my research team have direct access to data in REDCap?

In general, data housed in REDCap is managed by UCLA and data is exported in a cleaned .csv format when a collaborator requests to view their data. However, it is possible for collaborators to access REDCap directly for data upload and download once certain security steps are taken. Please refer to our REDCap page for step-by-step instructions on how to gain and manage data access.

What is a GUID?

A GUID, or globally unique identifer is a method of linking and tracking participant data over multiple collections. Identifying information including a subject's name, date of birth, and a couple of other items facilitates matching of identification across multiple research sites. The ICR will be integrating GUIDs in a way that secures any personal identifying information as described here.

What kind of studies does the ICR accept?

We accept studies that fit the following criteria:

Human subjects research
On the topic of physical health or tangentially related to it

I already developed my study materials in a format other than REDCap. Can I still use them as is?

While the ICR operates using REDCap as a distribution and storage system, we have the capability to use other formats. Namely, pre-built Qualtrics forms can be translated into REDCap. Please contact an ICR team member for details on steps to take to enable this conversion.

Some of my study materials are copyrighted - can I still use those study instruments?

Yes. The ICR collects raw scores of copyrighted instruments instead of the entire form. We encourage investigators collecting data to directly upload those scores into the study-specific REDCap. For more details on how to do that, please reference our REDCap information page.

Does the ICR have any requirements for acknowledgements in research endeavors?

Per our authorship guidelines, the ICR must be acknowledged in the following manner:

Inclusion of the following statement in the acknowledgements section of a manuscript:
- "This project is supported by the Infrastructure for Collaborative Research (ICR). The information, content and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by the ICR."
Citation of the seminal ICR manuscript that describes its function <Publ. Link>
Use of "ICR" as one of the keywords for indexing purposes in manuscript repositories.

What is the expected timeline from ICR application to study implementation?

Applications are rolling. Upon submission, applications undergo a review process over a period of up to six weeks. Reviewers have one month to provide their initial review, with edits and adjustments being implemented within a two-week period after initial feedback. Once accepted, projects are integrated into the REDCap system and launched according to schedules determined by the study team(s). These timing of these later steps in implementation vary depending on the complexity of study materials and specifics of the project. However, we anticipate that at minimum, the time from ICR application of study start is at least six weeks.

We recommended applying to the ICR and submitting any other necessary documentation (e.g. IRB application) in tandem to expedite your study launch.

Data Use Agreements and the ICR

To transfer data to or from the ICR, a Data Use Agreement (DUA) is required. More information can be found here. Only one DUA is needed per institution to enable data sharing on any number of collaborative projects.

How much will this cost?

The ICR is financed by the Autism Intervention Research Network on Physical Health (AIR-P) and its grant from Health Resources and Services Administration (HRSA). Internal costs, such as consultation, data hosting, project review and otherwise are free of charge. Project specific financials such as participant compensation fall under the purview of the collaborating institutions.

Please reach out to us at ICR@mednet.ucla.edu if you have questions about your specific situation.

Accepted project formats

Currently, the ICR supports new or ongoing research related to the physical health in neurodiverse people. This is generally in the form of surveys, QI, or otherwise applied to human subjects. If you have questions about whether your research project is suitable for the ICR, please contact us at ICR@mednet.ucla.edu.

Deposition of data from completed projects is planned to be available in the future, but is not available at the moment. As with all projects, a Data Use Agreement is required to allow for the transfer of data, such as the depositing of data in our database. To find more information about how to complete a data use agreement please reference our resources on the matter.