Matrix Rare Disease Platform

"The Power of Being Counted" report, developed by Rare-X and released in June of 2022, revealed a significant reality: there are nearly 11,000 rare diseases and almost 400 million people globally affected by rare diseases. This expands the previously quoted statistic of "more than 7,000 rare diseases" provided by governments and industry. Moreover, with advancements in genetic testing, sequencing, and other techniques, we are discovering that some historically categorized large rare disease populations are actually comprised of smaller, defined subgroups. For example, while we knew 30 years ago that cystic fibrosis was caused by a genetic defect, we now understand that there are over 1,700 mutations of the CFTR gene that can lead to this disease.

With the constant identification of new rare diseases and the subdivision of existing ones, it is crucial to disrupt the approach to rare disease research. We must be effective and efficient with our resources, embracing a sense of urgency. Some of the specific problems we intend to tackle within this complex ecosystem are:

Recruitment issues:

Identifying and locating diverse populations and subpopulations of patients for clinical trials can be expensive. Extensive screening programs and coordination across multiple global clinical sites are often necessary, presenting logistical challenges and resulting in lengthy and costly processes. The heterogeneity of the patient population in terms of demographic and disease-related factors further complicates enrollment.

Trial Design challenges:

Developing safe and effective treatments for the growing number of rare diseases is becoming increasingly challenging and costly. Randomized clinical trials (RCTs) are the gold standard, but they may not always be feasible for rare diseases due to smaller sample sizes. Embracing more continuous data collection and agile study designs, while departing from traditional trial models, becomes essential.

Placebo problems:

Placebo groups may not always be suitable for rare disease trials due to the limited number of patients and ethical considerations, especially for life-threatening conditions. Access to historical patient registry data, natural history data, and previously collected real-world data is necessary to provide some form of control and understanding.

Endpoints consideration:

Defining meaningful and relevant endpoints requires a deep understanding of a rare disease's natural history and expected progression. Understanding how patients respond to standard care or no intervention is crucial. Obtaining this information is challenging without access to data. The time required to build, launch, and collect significant data from a Natural History Study significantly impacts time to market.

By confronting these issues directly, we can decrease the environmental impacts throughout the ecosystem by accelerating the development of effective therapies, improving patient outcomes, and bringing hope to individuals affected by rare diseases worldwide!

The Matrix rare disease platform, developed by Across Healthcare, is a sophisticated web-based software application that aims to connect and facilitate collaboration among rare disease patients, caregivers, clinicians, foundations, groups, researchers, and others within the rare disease community. The platform was designed with user-friendliness in mind, abstracting away complexities and considering user motivations to encourage participation.

Jason Colquitt, the founder and CEO of Across Healthcare and a rare disease patient himself, conceptualized the platform based on the Co-Production of Care concept. Matrix strives to empower users and promote collective learning from the collected data.

Matrix is accessible via web browsers on various devices such as desktops, laptops, tablets, and phones. It can also be seamlessly integrated and embedded within electronic health records (EHRs) like Epic, Cerner, and others, reducing the burden for participating sites. Additionally, Matrix has integration capabilities with over 500 devices, apps, and sensors, enabling the ingestion of external data to create comprehensive longitudinal datasets. The platform leverages Microsoft's Azure cloud platform and various technical components to deliver its capabilities.

The versatility of Matrix allows it to serve multiple purposes, acting as an international registry, a global natural history study tool, a robust set of patient tools, a data aggregation hub, and more. Physicians can utilize Matrix to enhance connectivity and continuity of care for their patients. Patients and caregivers can provide quick secure links to their Matrix records for emergency visits and an ongoing Matrix account with access for regular consultations. Furthermore, Matrix offers temporary read-only access to schools, sitters, and other family members.

Matrix is scalable, accommodating nano-rare communities as well as the largest global rare disease communities. Administrators have the ability to customize the branding, appearance, and capabilities of the platform to meet their specific needs. This includes integrating patient EHRs, incorporating standardized instruments and surveys, and implementing logic and prompts to drive completion. Additional administrators can leverage Matrix features for curation and abstraction services of scanned and uploaded charts, labs, tests, and more.

To facilitate global participation, Matrix is translated into multiple languages such as English, Spanish, Italian, German, French, Portuguese, Korean, Japanese, and Hebrew, with ongoing additions of new languages. Compliance with global regulatory frameworks, including HIPAA, GDPR, 21 CFR Part 11, and more, ensures adherence to privacy and security standards.

Ultimately, Matrix aims to break down barriers in data collection and aggregation. It replicates historical manual data collection processes such as ePROs, patient diaries, eCOAs, and eCRFs. It employs curation and abstraction workflows to unlock narrative and scanned data, integrates with EHRs, and incorporates sensor and device data. The goal is to provide the most complete and informed datasets for rare disease patient communities leveraging the Matrix platform.

A quick 2 minute demonstration of Matrix can be seen by clicking the "Watch Video" link in the upper right of the screen at https://www.acrossmatrix.com/.  A full demo can be requested by emailing info@acrossmatrix.com and typically takes an hour to cover the full platform.

The primary target for Matrix is the 400 million rare disease patients worldwide. The overarching goal of Matrix is to improve their care and proactively find cures. To achieve this primary objective, the target needs to extend to include various other individuals.

The next ring of the Matrix target comprises the families and caregivers who support these patients. Unfortunately, many patients and caregivers in 2023 still rely on paper binders, spreadsheets, and handwritten journals to manage their daily activities. Matrix aims to unlock this valuable data and provide patients and caregivers with a discreet data platform to collect, organize, and track important information. Through Matrix, patients and caregivers can also link to their electronic health records (EHRs) and receive updates every 7 days. All of this data can be utilized to generate patient and caregiver alerts and reminders, conduct analysis for comparison with the wider population, or shared with relevant parties outside of Matrix as desired.

Recognizing that rare disease advocacy groups, foundations, and trusts play a vital role in their respective communities, Matrix collaborates with these dedicated organizations to empower their entire community. As they have brand recognition and trust of their community, these organizations have the authority to define the branding of Matrix and establish uniform data collection standards within the platform. This includes incorporating standardized instruments and other well-defined data structures. We deeply value the input and needs of these communities and are grateful to have partnered with over 70 organizations, collecting data in more than 105 countries through Matrix.

The subsequent target group comprises the tireless rare disease clinicians who may also be researchers or investigators working closely with our patients, caregivers, and organizations. With patient and caregiver consent, these clinicians can be linked to their respective patients within Matrix, enabling access to the collected data. Clinicians can also contribute their own data and upload relevant information to be shared with patients and caregivers. If Matrix is embedded within a clinicians' EHR, they can conveniently access the platform through a link without needing to sign in separately. Moreover, in this embedded model, EHR data can be automatically mapped to prefill data fields within Matrix for collection by the clinician. Investigators and researchers can define and launch studies or sub-studies within Matrix to gather additional data.

Considering that data in the EHR and other available information of patients and caregivers may exist in narrative or scanned image formats, Matrix has implemented mechanisms to unlock this data. If such information is uploaded or attached to a patient's profile and tagged appropriately, a Matrix curation user can log in and discreetly abstract and map the narrative or scanned information.

Lastly, a significant focus of Matrix is to integrate the data generated by the devices, apps, and sensors used by patients and caregivers. These devices generate valuable datasets that need to be incorporated into the longitudinal patient data within Matrix. Currently, Matrix supports connectivity with over 500 devices, apps, and sensors, with ongoing efforts needed to expand this capability.

The Across Healthcare team is uniquely positioned to deliver this solution with both personal and professional passion. Our team consists of individuals who are rare disease patients themselves, caregivers to rare disease children, relatives of rare disease nephews and nieces, close friends of families with rare disease children, and acquaintances of rare disease patients. We have other diverse connections to the rare disease community as well, allowing us to deeply understand and empathize with the needs and challenges they face.

Furthermore, the Across Healthcare team has a wealth of professional experience in building EHRs, registries, and other software platforms in the healthcare and life science domain, spanning over 20+ years. Our team members have had the privilege of working with and even leading data collection technologies and registries for renowned organizations such as the Cystic Fibrosis Foundation, Muscular Dystrophy Association, American Heart Association, American College of Surgeons, American Society of Clinical Oncology, Society of Thoracic Surgeons, Genentech, TriNetX, Pfizer, Eli Lilly, and many others. This extensive professional background equips us with a comprehensive understanding of the industry landscape, as these organizations have set high standards for data collection within their respective communities.

Additionally, we have established partnerships with remarkable rare disease organizations and leaders. These collaborations enable us to maintain open and effective lines of communication, ensuring that we continuously enhance our platform to meet their specific needs. While we approach each situation with a solid game plan, we humbly acknowledge that we do not possess all the answers or solutions. Nevertheless, we reassure our partners that we excel in active listening and collaborative problem-solving, enabling us to execute and deliver on our promises.

Finally, as we expand globally, we are augmenting the Across team with language experts who possess in-depth knowledge of specific cultures and languages. This ensures that we fully comprehend the nuances and intricacies of different regions as we strive to make Matrix accessible and tailored to many diverse populations.

The Matrix rare disease platform has been a passion-driven endeavor that we have been self-funding for over four years. We firmly believe that numerous rare disease organizations can greatly benefit from the implementation of Matrix, which enables them to capture and enhance their data, leading to a definitive understanding of their diseases. By having comprehensive data at their disposal, these organizations can attract researchers, biotech companies, and pharmaceutical companies to their communities, potentially expanding the options available for clinical trials. Unfortunately, many of these organizations face obstacles such as a lack of awareness about the importance of data, competing priorities, or insufficient funding, which often hinders their adoption of a platform like Matrix. Many of these groups are small, parent-led organizations with limited financial resources.

Given our company's mindset and passion, we have outlined below the areas in which we envision utilizing portions of the prize money:

• Research and Development: Allocate a portion of the prize money towards continuous research and development efforts. This could involve improving existing features, exploring new functionalities, and incorporating emerging technologies to enhance data collection, analysis, and visualization capabilities within Matrix.
• Marketing and Awareness Campaigns: Utilize a portion of the prize money to launch targeted marketing and awareness campaigns. This may include digital advertising, social media promotions, content creation, and participation in relevant conferences or events. The primary objective would be to increase visibility, attract new organizations, and foster partnerships with research institutions, biotech companies, and pharmaceutical firms.
• Expansion of Language Support: Invest a portion of the prize money in expanding language support within Matrix. This could involve collaborating with professional translation services to facilitate translations of the platform into additional languages. By broadening language accessibility, Matrix can reach a wider global audience and facilitate data collection from diverse populations.
• Collaboration with Rare Disease Organizations: Allocate funds to establish collaborations and partnerships with rare disease organizations. This could entail providing financial support to help these organizations implement and integrate Matrix into their operations. Collaborative initiatives can encourage knowledge exchange, community engagement, and data sharing, thereby strengthening the rare disease ecosystem.
• Improving User Experience: Dedicate a portion of the prize money to enhancing the user experience of Matrix. This might involve conducting user research, gathering feedback, and implementing user interface (UI) and user experience (UX) improvements to ensure the platform is intuitive, user-friendly, and tailored to the specific needs of rare disease patients, caregivers, clinicians, and researchers.
• Supporting Device Integration: Allocate resources to expand the integration of devices, apps, and sensors with Matrix. This could entail establishing partnerships with device manufacturers, developing APIs or software bridges, and conducting compatibility testing to seamlessly integrate data from various sources. Enhancing device integration capabilities will enrich the longitudinal datasets and provide valuable insights for research and personalized patient care.

By considering these areas of focus, the prize money can be effectively utilized to drive the growth, impact, and accessibility of the Matrix rare disease platform.

Jason Colquitt remembers the exhaustion he felt playing football in high school. Despite repeated hospitalizations for what was thought to be severe dehydration and rhabdomyolysis—a breakdown of muscle from intense exercise—it was years before anyone considered these episodes as something more serious. It would take a ten-day hospitalization for a doctor to tell him that such episodes were not normal and that testing should be done to determine what was causing his episodes. Nineteen years ago, at the age of 32, he was diagnosed with the rare mitochondrial disorder called carnitine palmitoyltransferase II deficiency.

Jason lives outside Atlanta, Georgia with his wife and four children. He has been blessed to meet and work with many amazing people and organizations during his 20+ years in the healthcare technology field. His work has caused positive disruption within the healthcare industry as he has partnered with many organizations ranging from small start-ups to some of the world's largest health companies including Greenway Health, Walgreens/Boots Alliance, Quintiles, IQVIA, Cystic Fibrosis Foundation, Muscular Dystrophy Association, the American College of Surgeons, and many more.

Today, Jason is CEO of Across Healthcare, which he founded in 2012 to envision, design, and deliver innovative technology solutions to organizations across the healthcare continuum. This includes supporting patient, provider, payor, and life sciences organizations. In January of 2019 while attending the JP Morgan Healthcare Conference, Jason received a clear vision to use his experiences and technical background to help the rare disease community. Thus, Matrix was born. It is Jason’s and Across Healthcare’s hope and desire to use the Matrix platform to help care for and cure rare diseases.

The Matrix rare disease platform is driven by innovation, offering a unique approach to addressing the challenges faced by rare disease communities.

One key aspect of our solution's innovation rests in its comprehensive and robust data capture capabilities. Matrix enables communities to collect and organize data from patients, caregivers, and clinicians, empowering them to definitively define their rare disease. By providing a centralized platform for data aggregation and analysis, Matrix revolutionizes the way rare disease data is collected, shared, and utilized.

Unlocking patient data silos such as data capture in notebooks, binders, spreadsheets, or handwritten journals, Matrix leverages technology to discreetly and efficiently collect, track, and analyze relevant data. Moreover, it offers integration with electronic health records (EHRs), allowing patients and caregivers to seamlessly access and incorporate their medical data. This approach not only improves the quality of care for rare disease patients but also accelerates research efforts by providing valuable insights for clinicians and researchers.

The impact of Matrix extends beyond individual communities. By facilitating data collection and sharing, our platform catalyzes collaboration among rare disease organizations, researchers, biotech companies, and pharmaceutical firms. This collaborative approach fosters a stronger ecosystem where valuable knowledge exchange, community engagement, and data sharing can occur. Researchers can access comprehensive datasets, enhancing their understanding of various rare diseases and potentially leading to innovative clinical trial models and breakthroughs in treatment options.

Furthermore, Matrix has the potential to transform the market dynamics in the rare disease space. Many organizations, especially small, parent-led groups with limited funding, struggle to adopt platforms like Matrix due to financial constraints. To address this, we have implemented a sliding scale pricing model based on the income of the organization. This innovative approach ensures that even organizations with limited resources can access the benefits of Matrix, leveling the playing field and democratizing data-driven solutions for rare diseases.

Through its innovative features and sustainable pricing model, Matrix has the power to change the market landscape. By attracting more rare disease organizations to adopt our platform, we can build a robust network of interconnected data sources, unlocking unprecedented insights into rare diseases. This data-driven approach will not only enhance patient care but also attract the attention of research institutions, biotech companies, and pharmaceutical firms seeking to develop novel therapies and treatments. Matrix has the potential to become a central hub for rare disease data, catalyzing broader positive impacts in the field and ultimately improving the lives of millions of patients worldwide.

In summary, the Matrix rare disease platform offers an innovative and sustainable solution by revolutionizing data capture, fostering collaboration, and democratizing access to data-driven tools. By leveraging technology and providing a supportive pricing model, Matrix has the potential to drive positive change, catalyze advancements, and transform the rare disease market.

Our impact goals for the next year and the next five years are centered around driving positive change in the lives of rare disease patients, caregivers, clinicians, and researchers. Our overarching mission is to improve care, advance research, and empower rare disease communities through the Matrix platform. To achieve these impact goals, we have outlined the following strategic approaches:

Expand Global Reach:

In the next year, we aim to continue to expand our presence in additional countries and regions, increasing access for rare disease organizations worldwide. This will involve targeted outreach, partnerships with local stakeholders, and translation services to facilitate language support and cultural adaptation. Over the next five years, we aspire to establish an even larger global network of interconnected rare disease communities, enabling comprehensive data sharing and collaboration on an unprecedented global scale.

Increase Data Collection and Analysis:

Our immediate goal is to significantly enhance data collection within Matrix by onboarding more rare disease organizations and empowering patients and caregivers to capture and track their health information. We plan to achieve this through strategic collaborations with rare disease advocacy groups, foundations, and trusts. By leveraging these partnerships, we will expand our user base, collect diverse datasets, and enable comprehensive analysis to drive insights and improvements in rare disease care and research.

Foster Collaboration and Research:

In the next year, we will actively facilitate collaborations between rare disease organizations, clinicians, researchers, biotech companies, and pharmaceutical firms. By providing a centralized platform for data sharing and knowledge exchange, we aim to catalyze innovative research, clinical trial advancements, and the development of targeted therapies. Over the next five years, we envision Matrix becoming a major hub for rare disease research, driving breakthrough discoveries, and transforming the landscape of treatment options available to patients.

Advocate for Policy and Funding:

To support our impact goals, we will actively engage in advocacy efforts aimed at raising awareness about the importance of rare disease data and the need for funding. We will work closely with policymakers, healthcare organizations, and research institutions to advocate for policies that prioritize rare disease research, ensure data privacy and security, and provide financial support to rare disease organizations. By influencing policy and securing funding, we can create an enabling environment for the sustainable growth and impact of the Matrix platform.

Innovate and Improve User Experience:

To remain at the forefront of rare disease data solutions, we are committed to continuous innovation and improvement of the Matrix platform. We will invest in research and development efforts to enhance data collection, analysis, and visualization capabilities. Additionally, we will prioritize user experience by incorporating user feedback, conducting user research, and implementing intuitive user interface (UI) and user experience (UX) improvements. By delivering a user-friendly and efficient platform, we will ensure that rare disease patients, caregivers, clinicians, and researchers can seamlessly harness the power of data for improved outcomes.

In conclusion, our impact goals for the next year and the next five years revolve around expanding global reach, increasing data collection and analysis, fostering collaboration and research, advocating for policy and funding, and continuous innovation. Through these strategic approaches, we aim to create a transformational impact on the lives of rare disease communities, driving advancements in care, research, and treatment options. With a strong commitment to our mission, we are confident in our ability to achieve these impact goals and make a lasting difference in the rare disease space.

We are committed to measuring our progress toward our impact goals to ensure accountability, track our achievements, and make data-driven decisions. We utilize a combination of key performance indicators (KPIs) and specific indicators to assess our progress and impact. Here are a few indicators we use to measure our progress:

• Number of Rare Disease Organizations Onboarded: We track the number of rare disease organizations that have adopted the Matrix platform. This indicator reflects our ability to expand our user base and increase the reach of our solution within the rare disease community.
• Data Collection and Integration: We measure the quantity and quality of data collected and integrated within Matrix. This includes tracking the number of patients/caregivers actively using the platform, the amount of health data captured, and the successful integration of data from external sources such as electronic health records and connected devices.
• Research Collaborations and Partnerships: We monitor the number of collaborations established with research institutions, biotech companies, and pharmaceutical firms. This indicator highlights our ability to facilitate meaningful partnerships that advance research, foster clinical trial advancements, and drive the development of targeted therapies.
• Accessibility and Language Support: We assess the expansion of language support within Matrix by tracking the number of languages in which the platform is available. This indicator helps us gauge our progress in making Matrix accessible to diverse populations and geographies, promoting inclusivity and global reach.
• User Satisfaction and Engagement: We employ user feedback and engagement metrics to measure user satisfaction and platform usability. This includes tracking user adoption rates, active user participation, and user-reported outcomes and experiences. High user satisfaction and engagement demonstrate the effectiveness of our solution and its positive impact on users.
• Advocacy and Policy Impact: We evaluate our advocacy efforts by monitoring policy changes, funding initiatives, and the adoption of rare disease research guidelines. This indicator reflects our ability to influence policy decisions, raise awareness about rare diseases, and secure support for our cause.

These indicators provide us with quantitative and qualitative data that allow us to measure our progress, identify areas for improvement, and demonstrate the impact of our solution. By continuously monitoring these indicators, we can ensure that we are on track to achieve our impact goals and make a meaningful difference in the lives of rare disease communities.

Our theory of change is based on the understanding that by addressing the specific challenges in rare disease research, the Matrix rare disease platform can have a transformative impact on the lives of individuals affected by rare diseases. Here is a simple explanation of how and why we expect our solution to make a difference:

• Improved Understanding of Rare Diseases: The Matrix platform enables researchers to gather and analyze comprehensive data on rare diseases, including genetic information, clinical data, and patient-reported outcomes. By harnessing the power of this data, we can gain a deeper understanding of the complexities of rare diseases, such as the existence of subgroups within larger populations. This enhanced understanding allows for more precise diagnosis, classification, and treatment strategies, ultimately improving patient outcomes.
• Streamlined Research and Recruitment: With the Matrix platform, researchers can overcome the challenges associated with identifying and recruiting diverse populations for clinical trials. By leveraging the platform's data capabilities and global reach, researchers can efficiently locate eligible patients, reducing the time and costs traditionally associated with patient recruitment. This streamlined process ensures that trials are conducted with a representative sample of patients, leading to more accurate results and faster development of therapies.
• Agile Trial Design and Endpoint Definition: The Matrix platform supports agile trial design, departing from the conventional randomized clinical trial (RCT) model that may not always be suitable for rare diseases with smaller sample sizes. By continuously collecting data and embracing adaptive trial designs, researchers can adapt their study protocols based on emerging insights and patient responses. This flexibility leads to more efficient and effective trials, accelerating the identification of safe and efficacious treatments.
• Enhanced Collaboration and Data Sharing: The Matrix platform fosters collaboration among researchers, clinicians, and industry stakeholders by providing a centralized platform for data sharing and analysis. By bringing together experts from diverse disciplines, we can leverage collective knowledge and expertise to accelerate rare disease research. The platform's data to enable researchers to validate findings, explore new hypotheses, and collaborate on innovative research projects. This collaborative approach maximizes the impact of research efforts and catalyzes breakthroughs in the understanding and treatment of rare diseases.

Through these key mechanisms, the Matrix rare disease platform is expected to have a profound impact on the rare disease ecosystem. By improving the understanding of rare diseases, streamlining research and recruitment processes, enabling agile trial design, and facilitating collaboration, we anticipate the following outcomes:

Immediate Outcomes:

• Comprehensive rare disease data sets
• Streamlined patient recruitment for clinical trials
• Enhanced collaboration among stakeholders

Intermediate Outcomes:

• Improved accuracy and efficiency of endpoints
• Faster development of safe and effective treatments
• Increased participation of diverse patient populations in research

Long-Term Outcomes:

• Improved patient outcomes and quality of life
• Reduction in the time and costs associated with rare disease research
• Empowered research community with shared knowledge and resources
• Finding cures!

By continually refining and improving our solution based on real-world outcomes, we aim to create a lasting and sustainable impact on the lives of individuals affected by rare diseases.

The core technology that powers the Matrix rare disease platform is a sophisticated and robust data entry, management, and analysis platform leveraging Microsoft's Azure infrastructure and capabilities. Here is an overview of the core technical components:

• Data Integration: The platform is designed to integrate and harmonize diverse data types from various sources, including electronic health records, genetic databases, patient registries, wearable devices, and patient-reported data. Our technology employs data integration techniques to ensure seamless data flow and interoperability, enabling researchers to access comprehensive and standardized datasets.
• Data Storage and Management: We leverage Azure’s SQL Server to securely store and manage vast amounts of rare disease data. Our technology adheres to stringent data privacy and security protocols to protect sensitive information while allowing authorized users to access and analyze the data efficiently.
• Data Analytics and Visualization: The platform incorporates Microsoft PowerBI capabilities to derive meaningful insights from the collected data. These analytical tools enable users to identify patterns, correlations, and potential treatment targets within the rare disease data. The results are presented through interactive visualizations and dashboards, facilitating data-driven decision-making.
• Devices, Apps, and Sensor Integration: The Matrix platform seamlessly integrates with devices, apps, and sensors, enabling remote data collection and real-time monitoring of patients' health. This integration enhances longitudinal data collection, improves patient engagement, and provides researchers with continuous, objective data for analysis.
• API and Interoperability: Our technology provides Application Programming Interfaces (APIs) and interoperability standards that enable seamless integration with external systems and data sources. This promotes data exchange and collaboration with external research platforms, registries, and healthcare systems, maximizing the value of shared data resources.  FHIR, CCDA , and SDTM are just a few of the standards we leverage.
• Security and Privacy: Ensuring the security and privacy of sensitive data is of paramount importance to us. Our technology implements robust security measures to protect data confidentiality, integrity, and availability. We adhere to strict security protocols and comply with regulations such as the General Data Protection Regulation (GDPR) and the Health Insurance Portability and Accountability Act (HIPAA). These compliance measures ensure that patient data is handled with the highest level of security and privacy, giving users the confidence that their information is protected.
• Regulatory Compliance and Validation: We understand the importance of regulatory compliance in the rare disease research landscape. Our platform is designed to meet the requirements of regulatory frameworks such as GxP, 21 CFR Part 11, and other relevant guidelines. We implement ongoing thorough validation processes to ensure the platform's readiness for regulatory submissions and/or audits. This involves comprehensive testing, documentation, and quality assurance procedures to demonstrate that the platform meets the necessary standards for data integrity, security, and traceability. By adhering to these regulatory standards, we provide researchers and organizations with a reliable and validated platform for their regulatory submissions.

The core technology of the Matrix platform is continuously evolving, incorporating advancements in data science, AI, and other emerging technologies.

14 Full-time staff

8 Part-time staff

3 Contractors

3 Interns

4+ years

Publicly launched and demoed for the first time at the NORD Summit in October 2019. 

At Across Healthcare, we are deeply committed to incorporating diversity, equity, and inclusivity into our work. We recognize the importance of diverse perspectives, experiences, and backgrounds in driving innovation and solving complex challenges in the rare disease domain. Our approach to diversity, equity, and inclusion is multi-faceted and encompasses various aspects of our organization.

1. Leadership Team Diversity: Our leadership team is intentionally diverse, comprising individuals from different ethnicities, genders, and backgrounds. We believe that having diverse leadership fosters a culture that enables us to make better decisions by drawing from a wide range of perspectives.

2. Recruitment and Hiring Practices: We have implemented inclusive recruitment and hiring practices to attract diverse talent. During the selection process, we prioritize assessing candidates' skills, qualifications, and potential, ensuring fair and unbiased evaluation.

3. User-Centric Design: In our platform development process, we prioritize user-centric design principles that consider the diverse needs and experiences of patients, caregivers, clinicians, and researchers. We conduct user research, engage in feedback loops, and involve diverse stakeholders to ensure our platform is accessible, inclusive, and tailored to meet their specific requirements.

By integrating diversity, equity, and inclusivity into our organization and practices, we aim to create a culture that embraces inclusivity and drives innovation. We believe that by incorporating diverse perspectives and experiences, we can develop solutions that better address the complex challenges in the rare disease landscape, ultimately improving outcomes for individuals and communities affected by rare diseases.

At Across Healthcare our business model revolves around providing value to rare disease organizations, researchers, clinicians, pharmaceutical companies, and biotechs by offering a comprehensive rare disease platform called Matrix. Matrix serves as a centralized hub for capturing, analyzing, and enhancing rare disease data to drive research, treatment development, and improve patient outcomes.

Key Customers and Beneficiaries:

• Rare Disease Organizations: We cater to a wide array of organizations, from small, parent-led rare disease organizations that often face challenges in data management and research collaboration to large well-funded and well-run organizations. Our platform empowers these organizations to capture and leverage comprehensive data, enabling them to define their diseases, attract research partners, and expand treatment options.
• Researchers and Clinicians: Matrix provides researchers and clinicians with access to high-quality rare disease data, facilitating research collaborations, and accelerating scientific discoveries. By enabling data-driven insights and analysis, we empower them to make informed decisions, identify potential treatment targets, and design more effective clinical trials.
• Pharmaceutical Companies/Biotechs: We offer pharmaceutical companies and biotechs a valuable resource by providing access to a robust rare disease data set. This enables them to identify patient populations, assess disease prevalence, and enhance clinical trial recruitment. By leveraging Matrix, pharmaceutical companies can optimize their research and development efforts, leading to more targeted and effective therapies.

Products and Services:

• Data Collection and Management: Matrix enables rare disease organizations to capture, store, and manage diverse data types, including clinical, genetic, and patient-reported information. Our platform ensures data privacy and security, adhering to GDPR and HIPAA regulations.
• Data Analysis and Visualization: We provide powerful analytical tools and visualization capabilities within Matrix, allowing researchers and clinicians to explore and interpret rare disease data. This enables them to identify patterns, trends, and potential treatment targets, ultimately leading to better patient care.
• Knowledge Exchange: Matrix facilitates collaboration and knowledge exchange among rare disease organizations, researchers, and clinicians. Our platform offers data sharing capabilities amongst these stakeholders, fostering a collaborative environment to advance rare disease research.
• Access to Historical and Real-World Data: Matrix integrates patient registry data, natural history data, and real-world evidence, providing valuable insights into disease progression, treatment outcomes, and patient experiences. This enables researchers and clinicians to make evidence-based decisions and design more patient-centered interventions.
• Consulting and Development Services: There are many request that do not fall into the pattern or capabilities of the core Matrix platform.  These consulting and development services can be deployed to solve these request as needed.

Revenue Generation:

Our revenue model is based on a subscription-based licensing system, where rare disease organizations, research institutions, and pharmaceutical companies pay a fee to access and utilize the Matrix platform. The subscription pricing is tailored to the size and needs of the organizations, ensuring affordability and accessibility.

Additionally, we explore partnerships with rare disease foundations, philanthropic organizations, and government grants to secure funding for research initiatives, platform enhancements, and expansion of language support.

At Across Healthcare, our plan for achieving financial sustainability is based on a diversified approach to revenue generation. We have carefully crafted a business model that encompasses multiple strategies to fund our work and cover our expenses.

Our primary revenue stream comes from subscription-based licensing of the Matrix platform. We offer flexible and scalable subscription plans tailored to the specific needs of our target customers, which include rare disease organizations, research institutions, pharmaceutical companies, and biotechs. These subscriptions provide access to the full suite of Matrix features, including data management tools, analysis capabilities, and collaboration functionalities. By offering a valuable and comprehensive solution, we generate consistent revenue that supports our ongoing operations and allows for continuous platform development.

In addition to subscription-based licensing, we actively pursue strategic partnerships with various stakeholders in the rare disease space. These partnerships involve collaborations with rare disease foundations, philanthropic organizations, and research institutions. Through these partnerships, we can secure grants and donations that provide financial support for specific research initiatives, platform enhancements, and expansion efforts. Collaborating with these organizations not only provides funding but also allows us to leverage their expertise, networks, and resources, thereby amplifying our impact in the rare disease community.

Furthermore, we explore opportunities to secure service contracts with government agencies. These contracts involve providing our platform and related services to support rare disease research and data management initiatives led by governmental entities. By demonstrating the value and effectiveness of our platform in addressing the specific needs of government agencies, we can generate additional revenue streams and expand our reach in the public sector.

In our pursuit of financial sustainability, we also remain open to exploring investment opportunities. While our primary focus is on revenue generated through subscriptions, partnerships, and government contracts, strategic investments could provide additional capital to fuel our growth and support the scaling of our operations. We carefully evaluate potential investors who share our vision and align with our mission to advance rare disease research and improve patient outcomes.

Overall, our financial sustainability plan is built on a combination of revenue streams, including subscription-based licensing, strategic partnerships, government contracts, and potential investments. This diversified approach ensures that we have multiple sources of funding to cover our expected expenses, support ongoing platform development, and drive our mission of empowering the rare disease community through data-driven solutions.

Over the last 4 years we have accrued many paying rare disease advocacy groups that understand the importance of a platform like Matrix and have the funding to support their vision.  These are SaaS agreements, so they mean recurring revenue.  The targeted revenue for Matrix across 2023 is projected to cover all cost for Matrix.