The CARA Core provides a range of services to ensure researchers have the tools they need to design and carry out their projects. Services are customized to fulfill the unique needs of each research project. We have expertise in a number of areas that can help teams take full advantage of the MATR registry and S4S cohort and can help assist in the development of new registries and cohort studies.
Study conceptualization, design and funding
- Project conceptualization: During the preliminary stage of a project, CARA Core can connect researchers with experts at VCU to explore study design and data analysis options. The scientific director of each registry is available to discuss the researcher’s vision and evaluate whether the registry can meet their goals. Additionally, experts at VCU may be tapped at this stage if additional support is needed up front or is anticipated for later phases of a project (i.e. data analysis).
- Recruitment design and feasibility assessment: Once a research concept is formulated, the CARA Core will work with the researcher to determine the best strategy for participant recruitment and assess to ensure, with some level of certainty, that the registry will be able to meet the goals of the researcher. This step takes place prior to a Letter of Support being provided for grant submissions.
- Grant funding opportunities: As a hub for information, CARA Core leadership actively promotes applying for funding opportunities. This may take the form of connecting researchers with the Research Development Division in the OVPRI, sharing information regarding existing research funding opportunities at VCU, or sharing notices of extramural grant funding opportunities with investigators.
- IRB submissions: CARA Core staff have extensive experience navigating the IRB review process and facilitate this aspect of research projects when VCU IRB approval is needed.
- Data and sample collection: The CARA Core team is equipped to carry out a variety of data and sample collection designs. We utilize multi-modal communications with our registrants (email, text, phone, mail) and collect data across platforms best suited to the needs of the researcher (online, CATI phone interview, app, paper). In addition, we can carry out DNA or other sample collections at VCU or remotely (mail, in-home).
- Usage protocol studies (turnover or spin-off studies): Study protocols that involve specialized measures typically need direct access to registrants and are considered registry usage protocols. For such projects, the registry will make initial contact with the participants to provide information about the study and ask permission to release their contact information to the usage study staff. Additionally, the registry may collect screening data or complete initial enrollment steps on behalf of the researcher.
- Access to available registry datasets: Our registries house de-identified or anonymized datasets that are made available to investigators in order to promote research and enable potential future registry projects stemming from these data. Access to many of these datasets are free.
- Registry matching: The nature of some research questions can be best answered by merging a registry’s data with that of another registry, institution, database, etc. In order to do so, a matching protocol typically takes place that ascertains the overlap between the differing entities and concludes with a de-identified or anonymized dataset provided to the researcher for analysis. CARA Core personnel are well versed in conducting such matches and are familiar with navigating regulatory and administrative processes inherent in these endeavors.
- Shared surveys: The CARA Core periodically administers surveys within a registry or cohort and invites collaborators to include survey items specific to their field of interest. The goal of such surveys is to support our collaborators in their research goals as well as develop future research projects.
Data analysis and interpretation
- Collaborators may request support for study design planning, educational opportunities and statistical analyses in anticipation of grant submissions and throughout the life of a project. The CARA Core can help connect researchers to others with skills in statistical genetics and genetic epidemiology research who can help advance project goals.
Building collaborative connections
- We aim to ensure our collaborators have access to the resources they need to fully utilize our registries, repositories and datasets as well as connect with our community of researchers. For more information on how we facilitate a collaborative ecosystem, see Resources.