A distribution is a collection of studies, with access granted for the whole collection. They are organized by disorder (e.g., Schizophrenia, Bipolar, etc.) or by theme (e.g., controls or iPSCs). Typically, the subjects are consented to allow research for that disorder or related conditions, or for general research use.
The difference between Distribution 2.0 and 3.0 is that at least one new study has been added, so there is an added acknowledgement in the Distribution Agreement and Amendment to indicate this. If a user has access to Distribution 2.0, they would have to process an amendment to indicate this before getting access to Distribution 3.0. A change in the number after the decimal point (ie 2.2) indicates changes or additions without adding new studies, so an Amendment is not needed.
Biorepository for Psychiatric Research
The NIMH Repository and Genomics Resource (NRGR) is one of several data repositories funded by National Institutes of Health (NIH). We are the only NIH repository that specializes in offering the research community DNA, RNA, and cell lines from large collections of individuals with psychiatric illness and psychiatrically normal controls. At a minimum we provide basic demographic and diagnostic data on all our biospecimens; for most of our biospecimens we have detailed diagnostic data, frequently item level data on major assessment instruments, available for download. We also have genotype, DNA sequence, and gene expression data associated with a subset of our biospecimens.
Different data repositories specialize in managing different types of data, and data from a single individual may be deposited into multiple different repositories. The NIH, guided by the new strategic plan for data science, is working to optimize integration between repositories to maximize the utility of all collected data, but currently researchers may need to navigate several additional repositories to obtain all available data on a given subject:
- The NIMH Data Archive (NDA) holds clinical, imaging, and neurosignal data on subjects from a wide range of NIMH studies, but only a fraction of the studies in the NDA are in the NRGR, as the NDA includes very many studies without a genetic component.
- The database of Genotypes and Phenotypes (dbGaP) is an NIH-wide repository of phenotypic and genomic data, but only a fraction of the studies in dbGAP are in the NRGR, as dbGAP includes many studies that are not related to psychiatric illness.
- The CommonMind Consortium Knowledge Portal provides sequencing and expression data from postmortem brain samples from donors with schizophrenia, bipolar disorder, and controls with no psychiatric illness. While biomaterials from these subjects are not available at the NRGR, researchers can apply for access to these data through the NRGR.
- The PsychENCODE Knowledge Portal provides data on non-coding regulatory elements and epigenetic modifications from subjects with psychiatric illness and controls, primarily from studies of postmortem brain samples. While biomaterials from these subjects are not available at the NRGR, researchers can apply for access to these data through the NRGR.
Access to Data & Biospecimens
Access is available to qualified researchers through a simple online Access Approval process. Access approval requires the researcher’s institutional approval and can take several weeks for the Data Access Committee to review and confirm. Review the complete instructions for access approval.
Yes. Non-academic institutions must undergo the same access approval application process as academic institutions.
Access Approval requires complete review by the Data Access Committee. There is a queue of prior requests, and review can take several weeks or longer, assuming the application is complete. It is always advisable to respond promptly to NIMH queries about your application materials to keep the process moving.
To order biomaterials, you will need to provide your NIMH Study ID number, the ind_id and RUID of the desired materials, along with identifying the quantity needed for your approved goals.
To order biomaterials, you will need to provide your access approval number, the ind_id and RUID of the desired materials, along with identifying the quantity needed for your approved goals.
Every time a new study is added to a collection, you must sign an amended access agreement to gain access to the updated collection. You do not lose access to the previous version until your original access approval expires. Updates to studies you already can access will be available to you without an amendment.
Sign and submit the amendment to the Genomics Resources Program Office for approval. Amendments are available on each distribution download page: Available Data > Disorder/Collection > Release Notes > Amendment.
You must sign a new Distribution Agreement (not an amendment) in order to gain access to data and biomaterials for a disorder to which you have not previously been granted access.
Submitting Data & AutoQC
The NRGR Communications & Curation team is available for personalized training sessions in advance of data submission. If you are preparing to submit data, please reach out to firstname.lastname@example.org to schedule a training session. We encourage studies to train on the submission process as early in the study as possible.
Yes! We encourage studies to use the AutoQC system to test interim data before their final submission is due, to familiarize themselves with the process and error messages, and also to catch data entry errors in advance of publication.
Submit a helpdesk ticket to email@example.com, and include your study ID and AutoQC submission ID in the helpdesk ticket. Someone from the NRGR curation team will review your questions. If necessary, we can schedule a webex session to guide you through corrections.
"Workflow Generator Failed" – occurs when the component parts of a submission are faulty or incomplete. Common causes include dictionaries with improper formatting (_phen_dd and/or _dx), especially when missing columns. Check that your dictionary is of the proper format.
"Workflow Generator Error" – this may indicate a bug in the AutoQC system.
Please notify us via the helpdesk firstname.lastname@example.org when one of these errors is generated, including a screenshot and the attempted submission .zip package.
It is very likely that an NRGR curator will reach out to you with clarifying questions and/or requests for updates, and will guide you through the re-submission process if necessary. The Manual QC process includes expert review of your study-defined data dictionaries, confirmation that your submission is complete per your NIMH-approved Data Sharing Plan, and other checks based on the type of data submitted.
Before your data is released, the NRGR curation team will inform you of the final submission package being released and the intended release date via email.
Still have Questions or Concerns?
If you have questions about the Repository's tools or our website, or if you have suggestions for enhancements, you can email the helpdesk at email@example.com.
If you have questions regarding the approval process or Distribution Agreements, please email the NIMH Repository Support Team at NIMH.firstname.lastname@example.org.
If you have questions about ordering samples from NRGR via Sampled, please email David Keller's team at email@example.com.
For Stem Cell related questions, you can email firstname.lastname@example.org.