Access to Data and Biomaterials

The National Institute of Mental Health (NIMH) Human Genetics Initiative is devoted to the collection and distribution of family data for the genetic analysis of schizophrenia, bipolar I disorder, depression, Alzheimer's disease, autism, obsessive-compulsive disorder, and other mental disorders. Anonymous data on family structure, age, sex, clinical status, and diagnosis ("clinical data"), DNA samples and cell line cultures ("biomaterials"), and data derived from genotyping and other genetic analyses of these clinical data and biomaterials ("genetic analysis data"), are distributed to qualified researchers studying the genetics of mental disorders and other complex diseases at recognized biomedical research facilities.

Researchers may gain access to clinical data, genetic analysis data, and biomaterials under one of two conditions: (1) a peer-reviewed NIMH research grant to analyze these data is awarded. In this circumstance, there is no charge to obtain DNA samples or lymphoblastoid cell lines; or (2) certification as a qualified investigator to access the data and biomaterials is obtained. In this circumstance, DNA samples or lymphoblastoid cell lines may be obtained from the NIMH Center for Genetic Studies after payment of all access fees as described in paragraph 10 of the Distribution Agreement.

 

Instructions for Access to Data

The Genetic Basis of Schizophrenia, Mood, and Other Brain Disorders Program in the NIMH's Genetics Research Branch (GRB) supports interdisciplinary research on the localization and identification of genes that influence susceptibility to serious brain disorders. Technical assistance in developing a grant application to analyze data in the Human Genetics Initiative may be obtained by contacting Dr. Thomas Lehner, the chief of this Program. Principal Investigators who gain access to data and biomaterials through this option must submit the following:

Request for access to data from the NIMH Center for Collaborative Genetics Studies on Mental Disorders (https://www.nimhgenetics.org/):

Data access requests should consist of an email sent to Nicole Ma with the following attachments:

    1. A cover letter containing the name, mailing address, e-mail address, fax number, and telephone number of the applicant principal investigator. This letter should be written on the letterhead of the sponsoring institution at which the research will be conducted and signed by PI.  Within the text of the letter, specify which data set is requested.  Data sets are separated by disease.  Indicate if the proposed analysis is funded and provide the grant number, or indicate whether the project is not funded (institutionally supported), but will form the basis for a new grant application.  Include to which NIH institute the application may be submitted.
    2. The biographical sketches of the applicant principal investigator and all co-investigators (PHS 398 format).
    3. Resources and Environment (PHS 398 format).
    4. Funding Information - Including source of funding, period of support, active/pending status.  In lieu of the above grant information, the "Other Support" pages from a PHS 398 application may be attached.
    5. A description of the study design that includes an abstract, background, and significance of approximately one page.
    6. A completed Distribution Agreement signed by PI and Institutional Signing Official.

 

Instructions for Access to Data and Biospecimens

Request for access to data and biospecimens (DNA Cell Lines, RNA, etc.) from the NIMH Center for Collaborative Genetics Studies on Mental Disorders (https://www.nimhgenetics.org/):

Data and biospecimens access requests should consist of an email sent to Nicole Ma with the following attachments:

    1. A cover letter containing the name, mailing address, e-mail address, fax number, and telephone number of the applicant principal investigator. This letter should be written on the letterhead of the sponsoring institution at which the research will be conducted and signed by PI.  Within the text of the letter, specify which biospecimen set with corresponding data are requested.  For example, 100 DNA samples from the schizophrenia collection, specific ID numbers are to be determined.  Or if you know the IDs then state "see attached file for ID numbers".  Alternately, often an investigator is asking to receive processed samples they submitted (i.e., DNA from submitted blood).  If this applies, state so, and cite the study number you were provided for sample submissions.  Indicate if the processed analysis if funded and provide the grant number, or indicate whether the project is not funded (institutionally supported), but will form the basis for a new grant application.  Include to which NIH institute the new application may be submitted.
    2. The biographical sketches of the applicant principal investigator and all co-investigators (PHS 398 format).
    3. Resources and Environment (PHS 398 format).
    4. Funding Information - Including source of funding, period of support, active/pending status.  In lieu of the above grant information, the "Other Support" pages from a PHS 398 application may be attached.
    5. A description of the study design that includes an abstract, background, and significance of approximately 1-2 page(s).  State how the biospecimens will be used, what data sets will be derived (GWAS, whole genome/exome sequence, variant cell files, transcriptome, methylation profile, etc.), and quantity of biospecimen requested (i.e., 25 ug DNA from cell line).
    6. A completed Distribution Agreement signed by PI and Institutional Signing Official.
    7. Provide a Data Sharing Plan.  In the data sharing plan, state what data you will deposit in NIMH/NIH designated database such as dbGaP.  On what timeline will data deposition be done.  For example, data will be deposited at 9 month intervals after data validation.  All data will be deposited by project end date and can be released to the research community under the governance of NIH after the project end date.

 

Ordering Samples - Important!

After access certification, an email confirmation will be sent to the principal investigator. Shipping information and an Excel file containing an NIMH cell line number (e.g. 00A01234) and NIMH subject ID number for each subject for which biomaterial is requested should be submitted to the Rutgers University Cell and DNA Repository (RUCDR) web portal at http://rucdr.rutgers.edu. The request will then be forwarded for approval to NIMH. Approved projects will be invoiced by RUCDR. For problems accessing the RUCDR web portal, please contact Dana Witt at witt@biology.rutgers.edu.

Contact Information

For questions regarding approval process/Distribution Agreement: Contact Nicole Ma from NIH at mani@mail.nih.gov

For questions regarding ordering samples from Rutgers: Email Dana Witt and David Keller at nimh@biology.rutgers.edu

For data questions: Contact Sue Winkeler from Washington Unversity at winkeles@psychiatry.wustl.edu

Rutgers University Rutgers University USC Information Sciences Institute Washington University in St.Louis National Institute of Mental Health