With July approaching, we wanted to help our autism-focused readers by posting some frequently asked questions concerning National Database for Autism Research (NDAR) data submissions. Semi-annual data submissions to NDAR are a requirement for a subset of NIH funded grants. In addition to this post, you can find valuable insights on the FAQ page on NDAR’s website which is quite comprehensive and overall very helpful.
At Prometheus Research, we frequently submit data to NDAR on behalf of our clients, so we’ve got firsthand knowledge of the Do’s and Don’ts for successfully completing the process. The most important safeguard you can take to ensure a smooth NDAR submission is to get started early. NDAR submissions can be very time consuming! In addition to the internal preparation you must do to get the data cleaned and formatted correctly, NDAR’s software and data submission standards frequently change and may require a significant investment of time to apply consistently to your research data.
Here are some frequently asked questions and helpful tips to ensure that your NDAR submission goes smoothly:
1. How soon should I start preparing for an NDAR submission?
Expect to begin preparation for an NDAR submission at least 3 months ahead of time. There are a number of administrative tasks necessary in order to complete a submission, in addition to a thorough review of the data before putting it in the correct format for submission to NDAR.
2. What steps need to be taken before submitting to NDAR?
Please see NDAR’s data sharing checklist for a list of steps to follow.
3. What are NDAR GUIDs?
In order to submit data to NDAR, it is necessary to generate an NDAR “Global Unique Identifier” (GUID) for each participant. The purpose of the NDAR GUID is to create an identifying code that allows a single research participant’s data to be compiled, even if the data is collected at different locations or by different studies. The GUID is created using personally identifying information such as a subject name, date of birth and city of birth, although this personally identifying information is never actually transferred to NDAR nor stored within NDAR’s database.
4. How do participants receive NDAR GUIDs?
NDAR provides software to help users generate GUIDs for research participants. Given the appropriate personally identifying information, the software can generate an NDAR GUID for each participant. In cases where not enoguh personally identifying information is available to generate a GUID, a placeholder pseudo-GUID may be assigned.
5. How does my data need to be formatted in order to submit to NDAR?
NDAR publishes a data dictionary that defines the standards for data submitted to NDAR. All data submitted to NDAR must be added to NDAR’s data dictionary and then validated by NDAR’s validation tool, which ensures that the data meets the standards outlined within the data dictionary.
6. What happens if we need to submit data that is not within NDAR’s data dictionary?
NDAR allows users to submit new data structures for phenotypic, imaging and genomics data. Custom data structures may be defined in order to suit your research. To add a custom data type, contact NDAR’s support team at firstname.lastname@example.org.
7. What happens if we need to make changes to an NDAR submission?
NDAR allows for cumulative submissions every 6 months (January and July) where an update to any past submission can be added. This update may include new participants, new data for old participants or updates to data from old participants.
8. I need help with my submission—who can I ask?
Prometheus Research is a leading provider of NDAR submission services. Please visit the NDAR Services section of our website for more information.