Research Policies for Outside Investigators
To promote a positive relationship with MSUTR twins/families and the judicious use of the MSUTR as a resource for research, we have developed guidelines for projects that access MSUTR data and/or conduct targeted recruitments from the registry. These policies relate to data use, recruitment, and publication and are designed to promote successful research efforts and a satisfactory experience for all involved.
- All proposals to use MSUTR data will be evaluated by the MSUTR Advisory Committee, particularly with regard to potential overlap in subject recruitment with other projects. This review is designed to maintain the integrity of the MSUTR as a resource and work out any issues of access. Once approval is received, access to the data will be granted or the recruitment process begun, depending on the needs of each investigator.
- Any data shared by the MSUTR will have personally identifying information removed, and any twins selected for recruitment into another study will be anonymous to the recruiting researchers until such time as they choose to participate in that study. All data files shared with outside researchers will identify twins/families by ID number only.
- For the reputation and good standing of the registry, consultation regarding twin methods and analyses may be necessary for researchers using the MSUTR as a resource for their studies.
- All projects recruiting from the registry must receive and maintain Institutional Review Board approval, both at the MDHHS and the researcher’s home institution (whether MSU or another institution). To facilitate the review process and ensure procedural familiarity on the part of MSUTR staff, the study protocol and copies of all consent forms and data collection materials must be submitted to the MSUTR.
- MSUTR staff prepare and facilitate the recruitment mailings, including printing recruitment materials, assembling recruitment packets, and delivering the packets to the MDHHS for mailing. In order to streamline the process and provide consistency for MDHHS staff, only the MSUTR investigators and staff communicate with MDHHS staff.
- As noted in the Recruitment Overview, a series of four recruitment mailings are sent per twin/family. All four mailings must be completed to those with no response, and all twins/families who indicate their interest in the study and meet the eligibility criteria must be allowed the opportunity to participate in the study (even if the target sample size has already been reached). Thus, the sample size chosen for each mailing series should account for participants being recruited after each of the four mailings, and the budget should be planned accordingly.
- The MSUTR staff does not contact twins/families beyond facilitating recruitment mailings. For example, the MSUTR staff does not perform eligibility screens and they do not schedule or assess the twins. The outside/primary study is responsible for all of the contact with the twins/families after they indicate an interest in participating.
- Timely updates must be provided to MSUTR staff regarding the recruitment status of twins contacted for the study, especially in the case of subject withdrawal. Any instances in which a twin/family requests no further contact from the MSUTR or related studies must be reported to MSUTR staff within 24 hours.
- Studies recruiting twins from the MSUTR are asked to reference the MSUTR as the recruitment source in the “Method” or “Participants” section of any papers submitted for publication.