Rare Disease Advocacy2018-10-04T18:47:29+00:00

An Agile Clinical Data Registry for Advancing the State of Care in Your Community

The vast majority of health data is generated outside of a clinical setting, which is why patient-reported and patient-generated data are increasingly needed to improve care—both during delivery and at home. Prometheus can create tailored patient registries that drive engagement and empowerment in your communities. RexRegistry delivers a secure, customizable coordinated clinical data management system for the collection, storage, and analysis of diverse data types.

A Clinical Data Registry that supports everything your collaborative community requires to advance medical research and provide hope for patients.

What RexRegistry Can Do

RexRegistry empowers your community to accelerate the pace
of new therapies.

RexRegistry is a next-generation clinical data registry platform with the power to engage your community, to improve their self care, and to (optionally) accelerate clinical research into new therapeutics for your disease area(s). Prometheus registry solutions deliver tailored patient engagement experiences while facilitating the collection and repurposing of research-grade data from a diverse community of stakeholders, including affected families, care providers, researchers, and even industry. Together with our team of informatics experts, we can help you steadily improve the state of care until a curative therapy becomes available—whether your strategy is to create a patient-driven registry, a care center network, and/or an industry partnership.

Request a Registry Consultation

For millennia, we have used stories to transmit knowledge within and between communities. Rather than attempt to outsmart most of human history, RexRegistry employs the concept of a story as an important technical metaphor; these stories serve as both a dialogue tool for translating our clients’ insights into software, and as a framework for creating user interactions that encourage participation, improve self efficacy, and provide meaningful feedback.

Disease advocates advance their community missions in myriad ways, which is why no two RexRegistry solutions look exactly the same; but every registry we build includes robust data collection capabilities that enable our clients to engage with supporters within and across the disease area(s) they serve. Importantly, RexRegistry’s agile approach to data collection means you can apply different methods simultaneously to carefully balance the need to collect information with the need to manage community fatigue—from a single “question of the day,” to validated research instruments, to absorbing entire electronic health records.

Every piece of information your community provides is a gift. They would be disappointed to learn their hard-won insights and reporting went unused, yet this is an all-too-common occurrence in patient registries when data of poor or unknown quality is allowed to enter the system. RexRegistry solutions mitigate this unwanted outcome by leveraging robust quality control and quality assurance mechanisms, which can flag problematic data the moment it is entered or arrives, and ensure data quality remains high over time.

Improving the lives of those in your community means looking beyond patient-reports—and even medical records. Most estimates suggest that 90% or more of health-relevant data is generated outside of a care setting, and this figure will only increase as data from always-on sensors in smartphones and wearables becomes easier to access. In addition to traditional registry data, RexRegistry is designed to incorporate new types of information from patients and partners (exogenous enrichment), while applying sophisticated analytics to derive novel information from existing registry data (endogenous enrichment). Together with Prometheus informaticists, RexRegistry can integrate seemingly disparate data sources to create world-class resources for advancing education, advocacy, and even therapeutic development.

Whether your primary goal is to improve self-care, develop a new therapy, or something in between, behind the scenes of each initiative will be one or more unsung heroes: the statisticians, data scientists, and researchers who busily “analyze” the registry data to answer potentially life-changing questions. Did you know that 80% of their “analysis” effort actually goes into the tedious, repetitive work of wrangling the raw data they typically receive into datasets that are usable for analysis? RexRegistry eliminates most of these monotonous tasks by delivering just-in-time analytic datasets that are already cleaned and organized for each specific data use—from annual reporting to the community, to risk adjustment analyses, to comparative effectiveness research. How would the ability to ask (and answer) 80% more questions advance your mission?

When data is organized for reuse, leveraging your clinical data registry for multiple purposes simultaneously becomes the norm, not the exception. RexRegistry solutions include powerful tools for securely sharing and repurposing any data from within and across your organizations different initiatives, including education, advocacy, and research.

An End-to-End Solution for Rare Disease Advocacy

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Encounters

Building a world-class, agile data registry that stands the test of time is no small task. We’ve put together a checklist to help you get started.

  • Initial questions you must ask before building for clinical data registry
  • Understanding what defines quality data and how to evaluate your existing data
  • Strategies to assure the future usability of your data
  • The value of data ownership and maintaining control of your registry infrastructure
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Everything You Need for Sustainable Success

We know researchers have very different local environments and levels of support. We can provide you with everyone and everything you need to make your registry a sustainable success, including hosting and managing your registry, and providing data management, training, and security consulting.

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Respecting the Privacy of Your Patients’ Data:
Our Security Policy

Prometheus treats all Data as highly confidential. We do not classify Data into different grades of sensitivity since only the Researcher knows what the data mean. Instead, we treat all Data under the assumption that it must be protected at the same level as Personal Health Information (PHI) as defined by U.S. federal regulations (specifically, HIPAA). View our complete Privacy Policy and Statement for Patient Portal Research Participants here.