The innovation of the Registry
Currently, there is not a sarcoma registry dedicated to patient-centered outcomes. Although the idea of functional and quality-of-life measurements entered by each patient is not unique to this study, its application to a sarcoma registry is novel. Our idea has the potential to recruit a large number of patients from diverse regions, provide a virtual format easy to navigate and maintain, and yield results that would solve clinical questions that have remained unanswered for decades.
A change from the previous paradigm of data collection will aid in our patient-centered focus.
Figure 1. Conceptual comparison of traditional (A)
and patient-centered (B) data collection.
Traditional data collection views the patient simply as a research subject and a means to successfully complete the project goals (Fig 1). In the traditional model, the provider is the most important element and is responsible for obtaining data, communicating with the registry, evaluating the information that comes from scientific reports, and disseminating that information to the patient.
We propose that by focusing instead on the patient, there will be advantages in data collection, long-term maintenance of the registry, and access to information. First, because the patients are self-reporting their own condition and well-being, the data may be more reflective of their true state than any information gathered by a third party. Next, by having patients enter data directly, we effectively negate the need for excessive administrative personnel, which will reduce the cost of daily maintenance of the registry and increase the likelihood of prolonged sustainability. Finally, the internet-based format of the database will allow for many other features (such as discussion forums with other patients, links to informational websites, updates on research and findings from the registry, and the ability to communicate with the research team) that will enhance patient expectations and understanding of their disease and treatment. In sum, our design allows the patient to be an active participant, rather than an uninformed passenger, in their own treatment