The CARRA Registry Intern Experience
Sarah Ringold, MD, MS, Seattle Children's Hospital
Mary Beth Son, MD, Boston Children's Hospital
As the inaugural interns for the CARRA Registry in 2016, we were both excited and unsure what to expect. Intern Registry projects have varied quite a bit, and ranged from those that are research based to those that further the development of the Registry itself. For example, Sarah is using Registry data to look more closely at medication use in JIA, which has resulted in an ACR abstract and a manuscript in the works, while Mary Beth is collaborating with several international registries to compare systemic arthritis patient populations. In regards to Registry growth, we worked on the addition of new diseases to the Registry, including systemic lupus erythematosus and related conditions, juvenile dermatomyositis and scleroderma.
Participating in these kinds of projects provides insight into many operational aspects of a Registry, as we were involved from the beginning with CRF design to discussions with DCRI regarding some of the finer points of programming the fields. Through these experiences, we developed a sense of how many people are needed to make the CARRA Registry work as well as it does. Attending the weekly call of the Registry Operations Committee, was one way we learned more about the inner workings of the Registry. From the Registry Executive Committee to the research coordinators to the DCRI staff, everyone’s contributions are critical in making the Registry a success. Other projects over our two-year tenure have included creating guidelines for the Registry, working on streamlining processes around data requests, and early work on the refinement of data dictionaries. CJ Inman, one of the sophomore CARRA interns with Marinka Twilt, is now working on the data dictionaries while Marinka is working with the CNO and auto-inflammatory working groups for disease addition. In addition, both are working on Registry collaborations with UCAN-Can Du and the Dartmouth Institute which focus on improving access to clinical, biological and PRO information to inform decision making as well as co-production of health care.
The benefits of the Registry Internship include the chance to work closely with the CARRA Registry Executive Committee who we now meet with every 2 weeks, as well as many other CARRA leaders. Being in this position also offers insight into CARRA’s relationship with our Industry partners. The Internship has academic advantages, as it offers funding for protected time and the opportunity for project development and manuscript preparation. As such, this is a great position for investigators at any stage of career development. As demonstrated by Jon Hausmann’s role as the inaugural Informatics Intern, there are also opportunities for those interested in the Informatics aspects of the Registry.
Over time, it became clear that the job of a Registry Intern has multiple facets: a liaison, a researcher, a collaborator. In our tenure as Registry Interns, we have learned a lot about the Registry and the people who make CARRA work - day in and day out. We have both really enjoyed our roles and hope to continue working with the CARRA Registry team. The application for the 2018-2019 Registry Internship will open soon. It’s a great opportunity, so please contact either of us if you would like more information!