Resources for National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grantees

Requirement for Providing Public Access to Data

The ACL Public Access Plan requires all scientific data generated from ACL/NIDILRR-funded research be publicly available and designates ICPSR as the preferred repository for all ACL/NIDILRR-funded research. The Archive of Data on Disability to Enable Policy and research (ADDEP) is a topical archive at ICPSR and is the place where you will find information and resources for NIDILRR grantees.

As per the terms and conditions of new NIDILRR grants that began in fiscal year 2018, investigators (Project Director and key research personnel) working on these grants are required to participate in an online training module on archiving, preserving, and sharing NIDILRR data. Grantees are required to meet the training requirement within the first 90 days of their award start date.

Writing a Data Management Plan

A Data Management Plan (DMP) is a formal document outlining how you plan to meet the requirement to provide public access to data collected with ACL/NIDILRR funding. A good starting point for writing your DMP is to understand the suggested elements to cover in a DMP and review ICPSR’s sample plan.

Writing Informed Consent and Data Sharing

In order to share your data at the conclusion of your NIDILRR award, you will want to draft your informed consent in a way that does not prohibit data sharing and advises study participants about your plan to share data at the conclusion of the project and under what conditions. See Recommended Informed Consent Language for Data Sharing from ICPSR and Informed Consentfrom the Qualitative Data Repository. If you are collecting data that include health information, review the HIPAA Privacy Rule.

Deposit Data at ICPSR for NIDILRR Grantees

Choose from two deposit options:

OPTION 1 - Self-Published at ICPSR: OPTION 2 - ICPSR-Assisted Archiving:
You want your data to be immediately available, albeit without review and curation by ICPSR staff. Data will be distributed exactly as they are deposited. This option is free to use, but data may be harder for others to find and use without ICPSR’s assistance in preparing the data. You want ICPSR to assist in the preparation of your data before release. Data will be reviewed for technical problems, carefully documented, and made available in a variety of statistical formats. There is a cost for these services, but data will be easier for others to find and use.
Step 1. Use ICPSR's Deposit Manager and begin by selecting [Start Deposit].
You will be asked to create an ICPSR MyData account if you do not already have one.
Pre-Deposit Step. Please contact ICPSR for a quote on a professional curation package. This is an allowable expense in your NIDILRR grant. You can do this as early as when you are developing your NIDILRR proposal and budget.
Step 2. Answer [NO] to question 1. Step 1. Use ICPSR's Deposit Manager and begin by selecting [Start Deposit].
You will be asked to create an ICPSR MyData account if you do not already have one.
Step 3. Answer [NO] to question 2. Step 2. Answer [NO] to question 1.
Step 4. Select [Deposit to openICPSR] for Question 3, which will redirect you to openICPSR. Step 3. Answer [NO] to question 2.
Step 5. Select [Share Data]. You may have to log in again to your MyData account. Step 4. Select [Deposit to ICPSR] for Question 3, fill in the requested information in the deposit form, and upload your data files and corresponding documentation.
Step 6. Select [+Create a New Project], fill in the requested information in the deposit form, and upload your data files and corresponding documentation.  

Features of the ICPSR Deposit Manager

  • Enter Project Information - You will fill out a set of fields that should be self-explanatory. You can click on the question mark next to each field for a more detailed description. For the “Funding Sources” field, when you click “add value,” you should enter “NIDILRR” for the “Organization Name” field, and enter your award number in the “Grant Number” field. 
  • Return to your Submission at Any Time - Once you have entered the Project Title and clicked [Save & Apply], you will be able to log in and continue your deposit in multiple sittings.
  • Add Collaborators - You can share the project in the deposit form by adding email addresses for others. Just click [Share Project].
  • Add ICPSR Staff - You may share your deposit with Shane Redman, if you would like ICPSR’s help with the deposit.
  • Upload Data - You can include multiple files and/or zipped files on a single deposit if all of the data you want to upload will be for one study.
  • Submit to ICPSR/Publish Project - Once you have completed all of the relevant fields and uploaded all of your data files and accompanying documentation, you can click on the “Submit to ICPSR” or “Publish Project” button. This will take you to the deposit agreement page where you will “sign” the deposit and the data will then enter ICPSR’s archive.
  • Get more Help - Watch a tutorial on the ICPSR deposit system or contact us.