Research Proposals and Data Access

MCTFR proposals are expected to develop in a collaborative process, drawing on expertise from the MCTFR Principal Investigators to ensure that publications reflect a cohesive body of research from the MCTFR.  Proposals must be sponsored and reviewed by at least one of the MCTFR Principal Investigators prior to review by the larger PI group.   

Authors are expected to assemble their own datasets from the MCTFR data extraction system. The proposal process and data preparation may require several months.

Authors are also required to present at the MCTFR seminar series.

Proposal Process

1. Review MCTFR Research Proposals & Authorship Guidelines.
2. The sponsor PI(s) must review proposal prior to submission.
3. Proposals should be sent to [email protected] using the proposal template.
4. Authors will be invited to present an overview of the proposal at an MCTFR Principal Investigator meeting.  No formal presentation is required,  just 1-2 slides (no more than 5-6 minutes) with an overview of the proposal, focusing on cohorts, variables, and analysis plan.
5. Based on feedback from the proposal discussion, MCTFR will communicate any necessary stipulations within two (2) weeks of final submission. The author should work with the sponsor PI to develop the final version of the proposal.  The sponsor PI will provide rationale for any decision to not incorporate PI feedback, if applicable.
6. The final proposal should be submitted via Proposal Request Form.  

For UMN-affiliated investigators, there are two steps in the process for requesting access to MCTFR data. 

• Step 1: Complete the MCTFR Research Proposal process.
• Step 2: After proposal approval, submit the MCTFR Researcher Data Access Agreement Form.  This form should be submitted by every individual that interacts with MCTFR data at any point.      
  • Note: If using PII data and your research aims differ significantly from MCTFR's, you must establish an independent IRB protocol

External investigators have additional administrative requirements which may differ according to the data classification and funding agency.  Sharing MCTFR data with external colleagues or organizations always requires a formal Data Use Agreement (DUA).  In addition, if external researchers wish to access Personally Identifiable Information (PII), a reliance agreement may be required.  

​ Access to MCTFR data should be established through the following process: 

• Research Proposal: The external researcher must first complete the MCTFR Research Proposal Process.
• Establish DUA & IRB Requirements: Following research proposal approval, a DUA should be established for all proposals:
  • Submit the MCTFR Data Use Agreement Request form.
    • The MCTFR Director will submit the request to MN-GEMS using the MCTFR’s established template (based on the standard FDP template).
    • MN-GEMS will negotiate directly with the external institution. If no revisions are requested by the receiving party, approval typically takes 3–4 weeks.  
  • If the proposal uses a limited data set (no PII), move to the Account Setup and Access Request step.
  • If the proposal uses PII Data and is federally funded: 
    • A reliance agreement is required.  The prime awardee typically serves as the IRB of Record.
    • If the external site is the prime awardee, it must be AAHRPP accredited or a SMART IRB 3.0 signer.  
    • The UMN investigator should submit a "Reliance Request" in ETHOS to initiate a Local Context Review.
  • If the proposal uses PII Data but is not federally funded: 
    • No reliance agreement required, but the UMN IRB will conduct a review to verify external compliance.
    • The UMN investigator should submit a "Not Human Research" (NHR) or "Data-Only" request in ETHOS to get formal clearance to release the data via DUA.  
•  Account Setup and Access Request: Once the DUA (and Reliance Agreement, if applicable) is fully executed, data access permissions are established:
  • Submit the MCTFR Researcher Data Access Agreement Form.  This form should be submitted by every individual that interacts with MCTFR data at any point. 
  • If the user already has a UMN x500 account, use existing credentials
  • If the user does not have a UMN x500, submit the MCTFR Sponsored Account Request Form to gain access to resources and required trainings. 

For questions, please contact: [email protected]

Data is considered de-identified if it does not contain any of the following 18 elements that could be used to identify an individual: 

1. Name
2. Geographic subdivisions smaller than a state.
3. All elements of dates (except year) for dates that are directly related to an individual, and all ages over 89 and all elements of dates (including year) indicative of such age
4. Telephone numbers
5. Fax numbers
6. Email addresses
7. Social security numbers
8. Medical record numbers
9. Health plan numbers
10. Account numbers
11. Certificate or license numbers
12. Vehicle identification/serial numbers, including license plate numbers
13. Device identification/serial numbers
14. Universal Resource Locators (URLs)
15. Internet protocol (IP) addresses
16. Biometric identifiers, including finger and voice prints
17. Full face photographs and comparable images
18. Any unique identifying number, code, or other similar information.

If your research requires any of these identifiers, it is considered PII (Personally Identifiable Information), and the MCTFR PII Data Use Agreement is required.  

MCTFR Remote Desktop 

The MCTFR offers a Microsoft Windows remote desktop service (RDS) to support research activities, data extraction, and analysis. The RDS provides mapped network drives and access to software like SPSS, R, and MS Office suite in a secure, OIT-compliant environment that users can connect to from any location. 

Using the RDS no longer requires VPN connection or using additional client software. Security is provided by encryption communication between your web browser and the server, and multi-factor authentication is provided by DUO. 

How to connect:

1. Prerequisites for using RDS:
   1. UMN Internet ID
   2. DUO Security
   3. Computer with a modern, up-to-date web Browser (e.g., Chrome, Firefox, Safari, Brave)
2. Please follow these Instructions when logging into the RDS for the first time; they include configuration steps to facilitate efficient usage.
3. To connect to the MCTFR RDS, navigate to https://apps.umn.edu.

Experience & Usage Notes:

• When opening SPSS for the first time, users may receive a warning/request to activate the existing SPSS license. Please agree/activate; it should be a one-time pop-up.
• If you experience problems with RDS usage, please refer to LATIS’ Getting Help page.
• LATIS is also the point of contact to request additional software installation or changes in RDS configuration. LATIS may need to consult with MCTFR Admin about changes and updates before implementing.
• Note that some login errors (such as "You cannot log on at this time") may be resolved by clearing your browser cache/cookies. 

Active Directory (AD) Shared Drives at the MCTFR provide a secure and centralized platform for researchers to access and share research files and data. To connect to the AD Drives follow this guide. 

LYNX is the primary tool used by MCTFR to search for and access research data. For instructions on how to use this tool, refer to the steps provided in this resource.

Coding documentation: The primary repository for MCTFR coding documentation is on the "V (Apps)" drive. If you do not have access to this drive, please submit a CLA Computing Resources Access Request form and specify that you need "MCTFR-Research" access. 

For questions, reach out to MCTFR Data Management Help at [email protected].  Once user access has been initialized, users should reach out to [email protected] to troubleshoot connectivity issues.  

*Please note:  A UMN x500 is required to view the Notebook sections.  Users external to UMN will need a sponsored account; to request a UMN sponsored account, complete and submit the MCTFR Sponsored Account Request Form.

New Notebook Sections (Irene Elkins, Meg Keyes, Linda Springer 2019-25)

The Notebook is a guide for those utilizing MCTFR data that contains documentation re: MCTFR data collected from 1990 to the present.  The older version of the MCTFR Notebook, last updated by Meg Keyes in 2016, is still located on the non-web MCTFR Intranet (V: Intranet/Research/Notebook).  Users should refer to the 'New Notebook Sections' before using this 2016 version.

Description of Samples and Decoding AgesX

• Overview: Detailed sample-level descriptions (e.g., Ns by sex and zygosity, anomalies, ect.) at each assessment wave for MCTFR Younger, Older, and Enrichment Twin cohorts, the SIBS cohort, and the AdBrain cohort. Usage and interpretation of AgesX variables.
• Details: Includes an overview of all MCTFR samples. 

COMN Intake 

• Overview: Includes data from the University of Minnesota - University of Colorado joint assessment studying the effects of recreational cannabis legalization in adult twins.  

ESFU4, MF, ML

• Overview: Includes data from assessments completed in 2018, including MF-MRI (FU6 of the younger cohort), ES-MRI (FU4 of the Enrichment cohort), and the ongoing Midlife (ML) assessment (FU4 of the older cohort, including COMN_ML Merge).
• Details: Tables summarizing all measures (psychophys and MRI), LYNX formset names, and references. The ES FU4 section describes derived data files (substance use variables, conduct disorder, ect.) available in P:/LYNX_DEVELOPMENT, developed by Jake Anderson.

SIBS Assessments Intake to FU3

• Overview: Comprehensive details on the Sibling Interaction and Behavior Study (SIBS) assessments from intake through FU3.
• Details: Each assessment wave contains tables of measures (with LYNX formset names), links to relevant Intranet documents, and a reference list.

Consensus Diagnoses

• Overview: Contains tables describing all MCTFR Consensus formsets, an explanation of diagnostic color coding, and interpretation of consensus variables, abbreviations, and suffixes.
• Details: Scripts location and Consensus syntax is also provided. 

Anthropometric Measures

• Overview: Updated information on height, weight, BMI, birth weight, grip strength, and gestational age.
• Details: Locations of derived data files. NOTE: This replaces the 2016 Notebook section on anthropometric measures.

Additional Summaries:

• Diagnosis Reliability Summary
• SIBS Family and Sibling Interaction Reliability Summary

Who Gets What, and When? (Linda Springer, 2020-26)

• Aptitude
• Personality
• Friends
• Gambling
• Social Adjustment Self-Report Items
• Alcohol & Marijuana Expectancies
• SIBS Environmental Measures

Life Events Conformability Documentation  (Di Samek & Linda Springer)

• Overview:  Data dictionary for Life Events items, for all MTFS & SIBS formsets. Includes unique item numbers for each event (which often may not match interview).

• What if I leave UMN while I’m still working on my proposal?   If a researcher leaves the UMN and wishes to retain data access, they must follow the process for external researchers outlined above. 

• My student is just coding data and doesn't need access to any MCTFR data systems (LYNX, etc).  What do they need to do?  All individuals who interact with the data at any point should submit the MCTFR Researcher Data Access Agreement Form. If they are working with identifiable data, they should be added to the IRB protocol (the MCTFR's if internal to the UMN, or the external researcher's IRB).