As defined by the National Institutes of Health, Patient Registries are “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical or policy purpose(s).” In brief, a patient registry is a collection of standardized information about a group of patients who share a condition or experience. The use of “patient” in patient registries is often used to distinguish the focus of the data set on health information. Within the BwP Project, while all participants have Parkinson’s Disease, we substitute the word “patient” with “Boxer”.
According to the National Institutes of Health, “Registries can be used to recruit patients to learn about a particular disease or condition; to learn about population behavior patterns and their association with disease development or for improving and monitoring the quality of health care.” Patient registries can also be used to monitor outcomes and study best practices in care or treatment. They may pursue a specific, focused research agenda, collecting data for a limited time to answer a specific research question (or questions), or may collect data on an indefinite basis to answer a variety of existing and emerging research questions.
Designed by a Rock Steady Boxing affiliate, the Boxers with Parkinson’s Project is a focused Patient Registry optimized for people suffering with Parkinson’s Disease specifically to study boxing as effective exercise therapy for Parkinson’s. The Project is designed to serve Rock Steady Boxing affiliates and other gyms who host boxing specific exercise therapy workouts for Parkinson's patients and who follow common intake and assessment practices and use common assessment tools. The RSB network of affiliates provides the Project with a ready network of Project members and a large population of Project subjects.
RSB says on their website that there are over 800 RSB affiliates and more than 36,000 boxers in the Rock Steady Boxing program. If the Bwp Project captures 1,000 boxers, it will be the largest project of its type ever organized. The BwP Project has the realistic potential of building its subject population to exceed 10,000 boxers over time.
Elements of Successful Patient-Powered Registries
Experts in PPRs and research network development and management share the belief that four fundamental elements are common to the development and management of a successful registry or network.
1. Well-designed technology.Critical to the success of a patient registry is the digital technology used to enable patients to join the network, report and store (and display) information, search for patients with similar experiences or conditions, and/or link to other resources. The design of a successful virtual platform requires technical expertise, patient-user involvement, and significant funding.
2. Recruitment, encouragement, and gratitude for participation.Without exception, registry and network founders and managers point to the need for ongoing promotion of the registry to grow the membership and activate members to report data on a regular basis. Larger or more active patient support or advocacy organizations may be more likely to find success but all registries must regularly promote and encourage ongoing participation to maintain a robust data set.
3. Collaborative relationships with researchers. To be effective as data sources for researchers—and ultimately meet the information or knowledge needs of patients—registries must work diligently to ensure that the data collected can be used for research. Some registries use scientific advisors or advisory teams to oversee the standardization of data. A second purpose for these advisors is their connection to similar researchers with interests in the condition or treatment who may serve as investigators on studies or connect the data set to other research products such as clinical trials, reports, or peer-reviewed articles.
4. Partnerships with a broad range of stakeholders.Many registries make it their goal to establish collaborative relationships with similar organizations for sharing resources, avoiding competition for members, and reducing the fracturing of efforts to collect data, raise funds, or advance knowledge.
Concerns About Patient Registries
Patient registries have been promoted and praised in both chronic and rare disease practice communities, and debated among comparative effectiveness researchers as to whether they provide valid data to compare treatments. Patient-generated patient registries in particular have been criticized on several levels, including the concern that only a small minority of patients with sufficient education and ability are able to participate, and that data may be biased for a variety of reasons. Experts have noted the lack of standardization in data collection and potential competition for registered patients across registries, which could create a fractured set of patient data. Patient registries have yielded a significant amount of research that meets the needs of patients and families. PPRs have also added to disease and treatment knowledge base. In addition to self-published articles, several PPRs have used their data or had their data used in published research.