Matrix is a software platform that enables patients, caregivers, family members, clinicians, researchers, and partner organizations to collect and manage rare disease data in one place. The platform is built to align with strong privacy and security expectations and to protect data in accordance with the consent each participant agrees to. Matrix supports both patient-entered data and clinician-entered eCRFs, so it can be used for real-world care workflows as well as structured research collection. Unlike many research-only systems, Matrix can also function like a personal health record for patients and caregivers—allowing them to track the information they care about and share it as they see fit. Many groups configure Matrix to capture the natural progression of a condition through a Natural History Study, helping communities better understand and quantify their disease over time. From there, organizations can build additional programs such as Phase II–IV clinical trials, post-market surveillance, and other studies. Matrix is designed to support multiple efforts on a single platform, reducing repetitive questions and minimizing burden on patients, caregivers, and sites. In addition to form-based data collection, Matrix can incorporate data from electronic health records (EHR) and connected devices to create a more complete longitudinal picture.

Today, Across Healthcare partners with organizations (most often patient advocacy groups) to deploy Matrix for the specific rare diseases those organizations support. Matrix is not currently offered as an open, direct-to-consumer sign-up for any rare disease patient. If your community or organization is not yet using Matrix, we encourage you to speak with your advocacy group or community leaders and invite them to connect with us to explore bringing Matrix to your disease area.

Many partner organizations brand the experience with their own logo, colors, and preferred program name (for example, a “Data Hub” or disease-specific registry), and some choose not to reference Matrix publicly at all. We do this intentionally because patient advocacy groups have earned community trust through years of dedication, and we’re proud to be the technology that supports their mission behind the scenes. If you’re unsure whether your organization uses Matrix, please contact us and we’ll help you confirm—or we can speak with your organization if they’re not currently using Matrix. Our goal is to support rare disease communities worldwide, whether or not Matrix is in place today.

We believe patients own their data. The organizations we partner with steward and manage access to data according to the permissions defined in their informed consent and governance policies. Matrix is the technical platform that enables secure collection, storage, and controlled sharing based on those permissions—it does not change who owns the data. Each organization also partners with an Institutional Review Board (IRB) or ethics committee to help oversee participant protections and ensure the consent language is clear about how data may be used.

Matrix is designed to keep your data safe and used only the way you agree to. We protect data with industry-standard security controls (like encryption, secure logins, and role-based access), and we limit access based on the permissions in the informed consent for your specific organization. Matrix is built to align with major privacy and regulatory expectations, including HIPAA (U.S. health data privacy), GDPR (EU data protection), and FDA 21 CFR Part 11 (controls for electronic records and audit trails used in regulated research). Security and privacy are core to how Matrix is built and operated.

Matrix is a software-as-a-service (SaaS) platform. We’re typically paid by partner organizations through an implementation/setup fee and an ongoing monthly subscription to operate, maintain, and support the platform.

Matrix maintains a neutral position—our role is to provide trusted technology that supports rare disease communities. We work with both nonprofit and for-profit organizations (including biotech and pharma) when they partner to deploy Matrix for a specific program or disease area. Importantly, any organization using Matrix is responsible for clearly describing its role, objectives, and any industry involvement through its informed consent and governance process so participants understand how data may be used and who may have access.

Matrix can collect many types of information, depending on what your organization’s program is designed to capture and what you consent to share. This may include patient- and caregiver-reported information (such as symptoms, quality of life, medications, and daily experience), clinician-entered eCRFs (clinical assessments and outcomes), surveys and validated instruments, and research or study data collected over time. Matrix can also support uploads of relevant medical records and documents, and—when enabled—incorporate data from electronic health record (EHR) sources and connected devices or wearables. Your organization’s informed consent and study materials describe exactly what is collected, how it will be used, and who can access it.

Matrix can return information back to you and/or your organization, depending on what your program enables and what you choose to share. For patients and caregivers, this often includes access to the information you’ve entered or uploaded, tools to track symptoms and outcomes over time, and summaries or reports you can download. A feature that’s different from many research-only tools is the Matrix Sharing Center, which lets you securely share the information you enter as a patient or caregiver with the people you choose—such as school nurses, family members, new physicians, or other caregivers—so they can view what you’ve stored in Matrix. For clinicians and research teams, Matrix can provide program-level views such as study dashboards, data exports, and aggregated insights that help them understand disease progression and outcomes. In many programs, results are shared in de-identified and aggregated form (so individuals aren’t singled out), and any sharing is governed by your organization’s consent, policies, and oversight. If you have questions about what your specific program returns, your organization can tell you what’s enabled for your community.

Within the permissions of your organization’s program, you can typically access and retrieve the data you’ve entered or uploaded in Matrix. Many communities enable patients and caregivers to view, download, and share their information (including through the Matrix Sharing Center) so you can provide it to new physicians, family members, schools, or other caregivers as needed. Any limits on what can be exported—or how certain data can be shared—are set by your specific organization’s consent and governance policies, and may vary by program and location. For organizations using Matrix, we also provide self-service tools to download their program data 24/7, supporting ongoing operations, analysis, and reporting. If you’re unsure what’s available in your community, contact your organization’s Matrix administrator and they can confirm what options are enabled for you.

We built Matrix for the long term. Our vision is to support communities across 10,000+ rare diseases worldwide, and we know that kind of mission requires sustained commitment for many years. Matrix is operated as a long-term platform with ongoing investment, active support, and continual improvement—so while no technology company can promise “forever,” we have no end in sight and are focused on being a stable, reliable partner for the rare disease community.

Researchers can access Matrix data through the organization that stewards the program and only under approved governance and consent. Typically, a researcher submits a request to the patient advocacy group or sponsoring organization (and, where applicable, its Institutional Review Board/ethics oversight) describing the question, the data needed, and how results will be used. If the request is approved and aligns with participant consent, access is provided in the appropriate form—often as de-identified, aggregated, or limited datasets, or via controlled exports—so privacy and community expectations are maintained. The exact process and level of access vary by organization, because each program sets its own policies, permissions, and review steps.

Matrix is different because it’s designed to serve the full rare disease ecosystem—not just a single study. Most platforms are built either for patient tracking or for research data capture; Matrix supports patient/caregiver tools and clinician-entered eCRFs on the same platform. Organizations can “stack” registries, natural history studies, Phase II–IV trials, and post-market surveillance without forcing families to start over or answer the same questions in multiple systems. Matrix is also community-first: patient advocacy groups can brand the experience as their own and govern how data is used through informed consent and oversight. Unlike many research-only tools, Matrix includes a Sharing Center so patients and caregivers can securely share the information they enter with people they choose—like new physicians, family members, or school nurses—so the data supports real life, not just research. Technically, Matrix is also ahead of many platforms, with U.S.-based EHR integrations, 600+ device/app integrations, and workflows to curate information that lives in narrative notes or scanned documents. It can ingest and harmonize data from multiple sources, including existing registries, and it supports patient-mediated review so individuals can approve or decline certain incoming data when that option is enabled. Finally, Matrix is built to be user-friendly, making it easier for families, sites, and researchers to participate over time—and we’ve successfully migrated patient communities from 15+ other platforms onto Matrix.

Matrix supports non-English speakers. The platform currently supports 11 languages, and we continue to expand language options over time. Specific languages available may vary by organization and program configuration, so if you don’t see your preferred language, contact your community’s Matrix team and we can help explore adding it.