Journal of Registry Management Continuing Education Quiz—SPRING 2022

Abstract

After reading the article and completing the quiz, the participants will be able to:

• Understand why a Merkel cell patient registry was implemented

• Describe the advantages of a rare tumor registry

• Describe the method for implementation of the Merkel Cell Carcinoma (MCC) Patient Registry

1. Which of the following was a deliverable from the MCC Patient Registry?

   1. Providing real-world data for drug development programs
   2. Uncovering low incidence toxicities
   3. Removing the need to capture MCC in traditional registries
   4. Both a and b
2. What is the planned time frame for the first patient to be accessioned into the MCC Patient Registry?

   1. 2022 Quarter 2
   2. 2022 Quarter 3
   3. 2021 Quarter 4
   4. The registry has been accessioning patients since 2018.
3. What is one reason cited for implementing the MCC Patient Registry?

   1. MCC is common and better therapies will affect many patients.
   2. The data circulating for MCC is not available to researchers.
   3. There is a large amount of data circulating about MCC that needed to be pared down.
   4. The data circulating in the public area does not match the clinical experience.
4. What is a reason cited that makes MCC difficult for conventional drug development?

   1. MCC patients are unwilling to participate in clinical trials.
   2. The low prevalence of MCC precludes the ability to conduct traditional head-to-head comparison trials.
   3. MCC is not collected in traditional registries.
   4. The high prevalence of MCC precludes the ability to conduct traditional head-to-head comparison trials.
5. What are some of the critical attributes listed in the article about the MCC Patient Registry?

   1. Has research-grade functionality, is web-based, and communicates with the traditional hospital-based registry
   2. Permits midstudy modifications, has research-grade functionality, and is accessible only to certain key providers
   3. Permits midstudy modifications, has research-grade functionality, and is accessible by multiple providers
   4. Provides data security, has a low-economic barrier to entry, and communicates with the traditional hospital-based registry
6. Which software was selected for the MCC Patient Registry?

   1. DAGs
   2. DCIs
   3. RWD
   4. REDCap
7. What is listed in the article as one of the primary purposes of the MCC Patient Registry?

   1. Identification of prognostic and predictive biomarkers in MCC
   2. Availability to all providers of MCC
   3. Concurrent abstraction for timely dissemination of MCC cases
   4. Standardization of treatment of MCC
8. According to Table 1, what is listed as one of items collected in the MCC Patient Registry?

   1. Facility performing the treatment
   2. Adverse events
   3. Physicians involved in the patient's care
   4. Time from diagnosis to treatment
9. How many tiers are there in the data access model for the MCC Patient Registry?

   1. Two
   2. Three
   3. Four
   4. None; tiers were abandoned due to lack of incentive for participation.
10. According to the article, it is the hope that the MCC Patient Registry will do which of the following?

    1. Improve strategies to treat MCC and sarcoma
    2. Improve the lives of patients with MCC and potentially others suffering from rare tumors
    3. Improve outcomes for MCC and HIV patients
    4. Provide a platform to pull data from EHRs into the MCC Patient Registry