Frequently Asked Questions (FAQs)
Available for download as a PDF here: NICHD DASH Frequently Asked Questions [115 kB]
This FAQs page aims to provide answers to questions that users may have about the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Data and Specimen Hub (DASH). It is organized into the following categories:
- About NICHD DASH
- Accessing NICHD DASH
- User Account
- Data Search
- Data Request
- Data Use & Compliance
- Data Submission
The FAQs supplements the NICHD DASH Policy and the NICHD DASH User Tutorial. Please review the
for step-by-step instructions on how to create a NICHD DASH account, search for and/or request data, and submit data.
For any questions that are not listed within this FAQs page, please contact the NICHD DASH Administrator at firstname.lastname@example.org.
1. What is the purpose of NICHD DASH?
NICHD DASH is a centralized resource for researchers to store and access de-identified data from NICHD-funded research studies for the purposes of secondary research use. It serves as a mechanism for NICHD-funded extramural and intramural investigators to share research data from studies in accordance with the NIH Data Sharing Policy and the NIH Genomic Data Sharing Policy.
By supporting data sharing through DASH, NICHD aims to accelerate scientific findings and improve human health.
2. What specific functionality or services are available in NICHD DASH?
Currently, NICHD DASH offers the following services:
- Search Data/Browse Studies
- Request data
- Submit data
3. Who governs the NICHD DASH?
The NICHD DASH Committee, which is comprised of staff from across NICHD, governs NICHD DASH. Specialized sub-committees (i.e., the Core Working Group and the Data Access Committee) provide additional support on DASH implementation, data submission, and data access. The NICHD DASH Administrator manages day-to-day operations such as data submissions and data access/requests.
4. Who governs the NICHD DASH Policy?
The NICHD Director and/or designee governs the NICHD DASH Policy and its implementation. In order to maintain policies consistent with evolving scientific, technological, and ethical considerations, the NICHD Director consults the NICHD DASH Committee members with appropriate policy knowledge and solicit (as needed) recommendations on the Policy from external experts representing public and scientific stakeholders through the NICHD Council.
If you have a question about the NICHD DASH Policy, please contact the NICHD DASH Administrator at email@example.com.
1. Who can access NICHD DASH?
Anyone can access NICHD DASH, which is a public website with free access to the scientific research community. All users may browse and view information about studies and data archived in NICHD DASH. Users who are interested in submitting or requesting study data must register for a free account.
2. Which browsers can be used to access NICHD DASH?
NICHD DASH is compatible with Google Chrome, Internet Explorer 10 and 11, Mozilla Firefox, and Safari.
1. Why do I need to register as a user?
Users who are interested in submitting or requesting study data must create an account so that the NICHD DASH Administrator can communicate with you about your data submissions and requests. In addition, once you register in DASH, the system can auto-populate a number of request fields, which simplifies the submission and request process.
2. May I register with my non-NIH email even if I have an NIH email or NIH Enterprise Directory (NED) account?
3. I created an account in NICHD DASH but have not received a confirmation email. What should I do?
A confirmation email to finalize your registration is sent to you by the system immediately after you signed an NICHD DASH User Agreement at the end of the registration process. Please note your registration is not complete, and you will not have access to registered users’ functionality, until you click on the link provided by the system. If you did not receive a confirmation email from the NICHD DASH Administrator, check your spam folder to make sure the email was not automatically routed there. If you do not receive a confirmation email within one business day, please firstname.lastname@example.org.
4. What should I do if I forget my password?
If you registered using your NIH email, the password is the same password you use for your NIH account. If you do not remember your NIH password, please contact the NIH Forgot Password page to recover or reset your password. If you are still experiencing problems, please open a ticket with NIH IT Service Desk.
If you registered using a non-NIH email and forgot your password, click “Sign Up/In” on the top menu bar of the NICHD DASH homepage. In the pop-up window, click on “I Forgot My Password.” A pop-up will direct you to enter the email address linked to your NICHD DASH account. After entering your email address and clicking “Send,” you will receive an email with a link that will allow you to reset your password.
5. How do I change my password or profile information?
To change your password or profile information, click "Update My Profile" on the top menu bar of NICHD DASH homepage after you have logged in. You will be directed to the NICHD DASH user profile dashboard. Here you will be able to change your password or other profile information (e.g., email address, name, job title, or institution).
6. Can other users access NICHD DASH using my account credentials?
No. When you created an account, you signed an NICHD DASH User Agreement that stipulated that you will keep your login information secure and private. Allowing others to log on with your credentials constitutes unauthorized access to NICHD DASH.
7. What should I do if I suspect my NICHD DASH account is being accessed by an unauthorized user?
You should contact the NICHD DASH Administrator at email@example.com as soon as possible.
8. Can my NICHD DASH account be deactivated for any reason?
Yes, the NICHD DASH Committee reserves the right to deny access to any individual who violates the NICHD DASH User Agreement (signed during account creation) or NICHD DASH Data Use Agreement (signed during data request), or who falsifies information provided during use of NICHD DASH.
9. How can I deactivate my account?
To deactivate your account, please contact the NICHD DASH Administrator at firstname.lastname@example.org.
For detailed instructions on searching for data archived in NICHD DASH, please refer to the NICHD DASH User Tutorial.
1. Do I need to register in NICHD DASH to perform a search?
No. You can perform searches and browse study information without registering in NICHD DASH. However, if you want to add a study item to your “Cart,” you will be asked to register.
2. Are there tips for performing an efficient search of study data?
Enter one or more keywords in the search bar located below the carousel of the NICHD DASH homepage, and click on the magnifying glass icon. When you are directed to the NICHD DASH search page populated with your search results, you can filter and refine your search results by selecting specific study criteria (e.g., study name, study type, enrollment start and end date, data collection start and end date, and location), and/or dataset (i.e., type and format), and/or document (i.e., type).
3. Can I review study data before I request it?
You can review information about a study and its associated data while searching or browsing NICHD DASH, but you cannot view the actual datasets. For each study displayed as a result of your search, you will be able to see the protocol, study timeline, study population, participants by sex/ethnicity/race/location, and description of the contents of each study document and dataset. To be able to view the data, you will need to submit a data request and download the data.
For detailed instructions on requesting data from NICHD DASH, please refer to the NICHD DASH User Tutorial.
1. I submitted my data request but have not received any notifications from NICHD DASH. What should I do?
Immediately after successfully submitting your request, you should receive an email from the NICHD DASH Administrator confirming the receipt of your submission. If you did not receive it, please check your spam folder to make sure the confirmation email from the NICHD DASH Administrator was not automatically routed there. If you do not receive a confirmation email within one business day, please send an email to email@example.com.
2. Who reviews my data request?
The NICHD DASH Data Access Committee reviews all requests to determine that a requester’s proposed use of the data is scientifically and ethically appropriate and does not conflict with constraints or informed consent limitations identified by the institutions that submitted the data. If you request data from a study that requires approval from a study-specific approving entity such as the Study Steering Committee, the NICHD DASH Data Access Committee will send the data request to that entity for final approval.
3. How long will it take for my data request to be reviewed and approved?
The NICHD DASH Data Access Committee takes about two weeks to review and approve requests. When review and approval from the study-specific approving entity is required, the process will take more time. Approval time can also vary depending on the data request’s complexity and/or if any study information, supporting documentation, or data use compliance measures are not complete.
4. Can I edit or cancel a data request that I submitted?
Yes. If you need to edit your data request after your data request package has been generated, you must log into the system, go to “My Cart,” click on the “Edit Request” button of the particular request, make your edits, and then generate your request package again. You must make these changes by using the DASH system Request Process; it is not sufficient to edit your Data Request Form document after the data request package has been generated.
5. How can I check the status of my data request?
You may check the status of your data request at any point from your cart until your request is approved. After logging in to NICHD DASH, click on “My Cart” located at the top right of the homepage. After request is approved your approved items are moved from “My Cart” to “Workbench”. You can view and download your data items from the “Workbench” “Inbox” folder.
6. Will I be notified once my data request is approved or denied?
Yes, you will receive an email from the NICHD DASH Administrator when your request is approved or denied by the NICHD DASH Data Access Committee and/or the Study Steering Committee (if applicable). If your request is denied, the email will also state the reason for denial.
7. Why was my data request not approved?
Data requests may not be approved for multiple reasons, including:
- Incomplete data request
- Lack of required supporting documentation
- A determination by the NICHD DASH Data Access Committee or the study-specific approving entity that your proposed use of the data is not scientifically or ethically appropriate, or that it conflicts with the submitting institution’s guidelines or informed consent limitations
The email you received from the NICHD DASH Administrator notifying you that your data request was not approved will include a justification.
If you need further clarification, please contact the NICHD DASH Administrator at firstname.lastname@example.org.
8. Is there a cost for obtaining data?
No. Data stored in NICHD DASH are distributed free of charge.
9. Who is the "Authorized Representative" for signing the Data Use Agreement?
The "Authorized Organization Representative" (AOR) as defined by NIH is the individual, named by the applicant organization, who is authorized to act for the applicant and to assume the obligations imposed by the Federal laws, regulations, requirements, and conditions that apply to grant applications or grant awards. Please see the NIH Grants Glossary page for additional details.
The AOR is also referred to as the Institutional Business Official in some cases.
10. Why does DASH require an institutional IRB approval for requesting data from some studies when DASH stores only de-identified data?
The requirement of IRB approval when requesting certain studies is determined by its IRB of record and data use limitations imposed by the study’s informed consent. DASH allows for study-specific requirements to ensure that the governance policies for studies are adhered to when requesting data from DASH.
11. I have requested a study data, received approval and downloaded the data to use for my research project. Now I want to use this data for a different research project. How can I obtain permission to do that?
You must submit a new request to use the data for a new research project by completing the following steps.
- Add your study of interest to your cart.
- Go to your cart, and click “Request Access” to start a new request. You will see a pop-up that asks you if you would like to use information from previous requests – clicking 'Yes' will autopopulate the General, Request Information, and Affiliates sections in the Data Request form.
- Edit any field as necessary and fill in the remainder of the required information.
- Generate the data request package, obtain the necessary signatures, upload the signed package to DASH and submit your request for approval.
1. How can I access the data once my request is approved?
Instructions on how to access data after your data request has been approved will be provided in the approval email that will be sent to you from the DASH Administrator. Briefly, once your data request is approved, you will be able to access the study data from your Workbench. After logging into NICHD DASH, click on “Workbench” located on the top menu bar of the NICHD DASH homepage.
Within your Workbench, you will see an “Inbox,” which contains the study items you requested. The files will be grouped by study in case you requested multiple studies. You can download the data from your Inbox.
2. Why was I granted access to the entire study even though I requested only specific study items?
Some studies have “Cart level approval,” meaning you will be granted access to only the specific study items (documents and datasets) you requested. Once approved, these specific items will be available in your “Inbox” for download.
Other studies have “Study level approval.” Upon approval of your request, you will have access to all study items (documents and datasets) and not just the items you specifically requested. All study items will be displayed in the “My Approved Items” folder but the specific items you had requested will be available in your “Inbox” for download. If at a later time, you are interested in other items from the approved study, you will be able to access them without having to go through the approval process.
During the data request process, when you add study items to your Cart, a pop-up window will appear to indicate what type of access the study allows.
3. What is the difference between Inbox and My Approved Items?
The Inbox contains the specific items (data and documents) you requested from a particular study that have been approved by the DASH Data Access Committee. However, DASH contains studies that fall under “study level approval,” which means that even though you requested only certain items from a study, the approval by the DASH Data Access Committee is at the study level and you will have access to all items from this study. All these study items are listed in the “My Approved Items” in your Workbench page and will be available until the validity of the Data Use Agreement expires, which is three years from the effective date on the Data Use Agreement. Since you are approved to access all study items, you will not have to submit a new data request for additional items that you may be interested in at a later time from the same study.
You can perform the following with the study items in your “Inbox” folder:
- Download selected study items.
- Remove selected items from your Inbox.
You can move study items from “My Approved Items” to Inbox for download.
4. Can I share data that I obtained from NICHD DASH with my colleagues?
You can only share data with those listed as ‘Approved Affiliates’, as per the NICHD DASH Data Use Agreement that you signed when requesting data.
5. How do I remove or add affiliates to an already executed Data Use Agreement?
To add or remove affiliates to an already executed Data Use Agreement, go to the “Workbench” section and select “DUA Management.” Identify the Data Use Agreement you would like to add or remove affiliates to, and click "Actions", then click “Modify Affiliates.” This page will display all current affiliates associated with the Data Use Agreement and you will be able to add or remove any registered users from your institution to your affiliates list. Once you are satisfied with the changes, click the “Confirm” button to finalize your changes. The requester and recipient will receive an email confirming the changes with the “Amendment to Appendix A: Affiliates” document attached in the email.
6. Are there restrictions or limitations to the use of data that I obtain from NICHD DASH?
The DASH Data Request Form that you completed when requesting the data lists any limitations to the use of data that was provided by the data submitter. These limitations must be taken into account when preparing your scientific research plan.
The NICHD DASH Data Use Agreement and Data Request Form that you signed when you requested study data also includes certain restrictions for its use. For complete information about data restrictions, please review the NICHD DASH Data Use Agreement you executed with NICHD.
7. Can I get a copy of the NICHD DASH Data Use Agreement that I executed with NICHD when I requested data?
Yes. Your NICHD DASH Data Use Agreements (DUAs) are sent to you as attachments in the email informing you that you Data Request has been approved. In addition, your DUAs are grouped by study in the “DUA Management” section on your “Workbench” Page. You can download copies of your DUAs from there by clicking "Actions" then clicking "Download DUA".
8. What is the validity of my NICHD DASH Data Use Agreement?
The Data Use Agreement you executed with NICHD is valid for a period of three years from the effective date of the DUA and will automatically expire at the end of this period unless terminated earlier or renewed.
9. How can I report problems or errors in the data I obtained from NICHD DASH?
If you discover any problems or errors in the data, please contact the NICHD DASH Administrator at email@example.com with a description of the issue.
10. What are the intellectual property considerations for data obtained from NICHD DASH?
NICHD encourages development of new diagnostics, therapeutics, or other interventions building on basic discoveries enabled through NICHD DASH. Please refer to the sections on Intellectual Property in the NICHD DASH Policy and the NICHD Data Use Agreement.
11. Who can answer additional questions regarding the data I obtained?
Please contact the NICHD DASH Administrator at firstname.lastname@example.org if you have additional questions.
For detailed instructions on submitting a study to NICHD DASH, please refer to the NICHD DASH User Tutorial.
1. Is it mandatory to submit my study data to NICHD DASH if I have received funding from NICHD?
No. NICHD encourages extramural and intramural research investigators funded by the Institute to use NICHD DASH to share data with other investigators. NICHD-funded investigators who do not submit their data to NICHD DASH should provide the name of the alternate data archive that they are using to archive their study data to the appropriate NICHD Program Officer/Project Scientist responsible for the study and are encouraged to justify why submission to the alternate archive is more suitable. This would allow NICHD DASH to catalog and provide a link to data storage locations of all NICHD-funded research studies.
2. Can I submit data to NICHD DASH if I already submitted to another publicly available archive?
If data from your NICHD-funded study is already stored in a publicly accessible archive, you do not have to submit it to DASH. Please email the link of the archive where your study data is stored to the NICHD DASH Administrator at email@example.com so that the link can be made available through NICHD DASH. If and when that archive is no longer available, you are encouraged to submit to DASH so that the data is available to other investigators. You can follow the submission process outlined in the NICHD DASH Tutorial when you are ready to submit.
3. What happens after I submit my study?
Your study submission will be reviewed by the NICHD Content Support Team for completeness and compliance with the NICHD DASH Policy. Submission review time can vary depending on the complexity of the data submitted and the degree of compliance to NICHD DASH Policy. Submission approval may be delayed if any study information, supporting documentations, or data annotation is incomplete or if the study is non-compliant. Final sign off for public release of the study data in NICHD DASH will be done by the appropriate NICHD Division or Center Director or Branch Chief.
You will be notified via an email message from the NICHD DASH Administrator when the submission is approved or denied, and if denied, the reason for denial.
4. Can I check the status of my study submission?
Yes. After logging into NICHD DASH, you may check the status of your data submission by clicking on “Submissions” found on the top menu bar of the NICHD DASH homepage and selecting “Manage Submissions.”
5. How will I know if my study submission is approved or denied?
You will be notified via email from the NICHD DASH Administrator when the submission is approved or denied, and if denied, the reason for denial.
Study submissions may not be approved for multiple reasons: incomplete information, lack of supporting documentations, non-compliance of data submissions with NICHD DASH Policy, determination by the Branch Chief of a conflict regarding NICHD grantee obligations.
If you have additional questions or need further clarification regarding a denied study submission, please contact the NICHD DASH Administrator at firstname.lastname@example.org.
6. How can I update data in a study that I previously submitted?
Please contact the NICHD DASH Administrator at email@example.com with your request.
7. I have submitted data to NICHD DASH. Now, one of my study participants has withdrawn her/his consent. How do I remove the participant from the data in NICHD DASH?
In the event that a participant withdraws consent for sharing of their individual-level data stored in NICHD DASH, please inform NICHD DASH Administrator at firstname.lastname@example.org as soon as possible. The NICHD DASH Administrator will remove the dataset in question, terminate the data use agreement(s) established with any data recipient(s), and instruct them to destroy the dataset in question that was provided by DASH. We will request you to submit a redacted dataset de-identified of HIPAA identifiers as replacement and will inform previous recipient(s) if and when that dataset is available.
8. What should I do if I started a submission and don’t want to pursue? Can it be deleted from my dashboard?
Please contact the NICHD DASH Administrator at email@example.com if you want to delete your submission.
9. Can I make changes to the submission pages that I have already completed?
Yes. If you need to make changes to any of the completed pages, navigate back to the specific section using the left side navigation menu bar and then to the specific page using the "Previous" or "Next" buttons at the bottom of the page. Please do not use the browser back button for navigation.
10. What is the Data Preparation Tool?
The Data Preparation Tool (DPT) is a standalone desktop application that study submitters must use in order to organize their study items (e.g., datasets, documents, and images) and to annotate these items prior to uploading them into DASH. Submitters can download DPT and use it offline. For more information please read the DPT section in the DASH tutorial. You can also download DPT from the Resources tab on the DASH homepage.
11. Where can I download the Data Preparation Tool?
The Data Preparation Tool (DPT) is available for download in two ways:
- During submission, you can access and download the DPT from the Data Preparation page.
- You can also download it from the “Resources” tab on the top menu bar of the DASH homepage. In the list of available resources, click “DASH Data Preparation Tool” and follow the installation instructions.
12. How can I get help on the Data Preparation Tool?
Help for the Data Preparation Tool (DPT) is available within DPT by clicking the “Help” button, represented by a question mark at the top right corner of the DPT window. Step by step instructions are also provided on the DPT page in the DASH Tutorial. You may also contact the NICHD DASH Administrator at firstname.lastname@example.org with any specific questions you have on the DPT.
13. Who can answer additional questions regarding data submission?
If you have additional questions, please contact the NICHD DASH Administrator at email@example.com.