PATIENTS' DATA POWERING PROGRESS

We are a dedicated team of committed forward thinkers transforming rare disease in support of patients.

We believe that rare patient communities, equipped to securely gather and share their data with collaborating researchers and companies around the globe, will significantly expand diversity, equity, and inclusion in research and dramatically accelerate progress across rare diseases.

Our Vision

RARE-X believes that by enabling rare patient communities to more easily gather, structure and securely share critical inclusive data, through a common platform, in collaboration with researchers, drug developers and clinicians anywhere in the world, we will accelerate diagnosis, disease understanding, and development of future treatments and cures across more than 9,500 rare diseases.

RARE-X is…

RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.

RARE- X is piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients.

RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).

RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research, development and care, around the world and in all communities.

RARE-X believes….

  • Patients’ data is critical to rare disease innovation — but does little to help advance progress if it is not inclusive and widely accessible for research.
  • Researchers need access to more and better data to transform rare disease drug development. Providing a way to break down the silos of these data sets is essential to progress.
  • Rare patient communities want their data shared, securely but openly — where it can drive better and faster progress.
  • Meaningful, equitable advancement in rare disease innovation requires global collaboration and sharing of data.
  • If patients are empowered and become partners in the data ownership process, it benefits all involved in rare disease diagnosis, research, discovery, drug development, and treatment.
  • Patients’ data should only be shared with their consent and for their primary benefit. RARE-X does not sell patients’ data.

RARE-X Guiding Principles

OWNERSHIP of Data:

  • RARE-X will ensure patient data contributors OWN and MANAGE the use and access of their data, enabled through governance, consent, and technology.
  • RARE-X will respect all data contributor’s requirements for the use and access of their data. 
  • RARE-X will NOT SELL data collected in the RARE-X DCP to anyone or any entity.

STANDARDIZATION of Data:

  • RARE-X will use domain-based, structured surveys based on data standards recommended by expert advisors in each domain to support collecting the highest quality data possible, and enable effective cross-disease research.

RETURNING DATA to Patient Community

  • RARE-X will work with the patient community to provide aggregated data in a format that the patient community finds useful and understandable.
  • RARE-X will ensure access to data for hypothesis-driven investigations to meet the needs of established researchers and citizen scientists.

COLLABORATION among stakeholders:

  • RARE-X does not intend to compete with or replace existing data collection efforts/data sources. Instead, RARE-X will support and enable collaborative research or development efforts across the ecosystem.

DIVERSITY AND INCLUSION:

  • RARE-X will work to ensure that all patients, regardless of race, national or ethnic origin, gender identity, gender expression, sexual orientation, age, disability, socioeconomic status, and cultural background, have the ability to participate as data contributors within the RARE-X ecosystem, and interact with the organization and its various platforms.  
  • RARE-X will work to ensure that representation within the organization, the Board of Directors, and advisors adequately represent and reflect the diversity within the rare disease ecosystem.

GOVERNANCE of Data:

  • RARE-X will manage data collection, access, and analysis under robust data governance policies, on behalf of the patient community. 

FAIR Guiding Principles

  • RARE-X Programs for data collection and sharing will adhere to the FAIR (Findability, Accessibility, Interoperability, Reusable) Guiding Principles

SCALABILITY of Technology and Processes:

  • RARE-X will deploy technologies and create dynamic processes that will scale to support the growing needs and demands of the global rare disease ecosystem.

GUIDANCE & EDUCATION for Rare Disease Patients/Communities:

  • RARE-X will provide guidance, training, and resources to patients and patient communities on consent, data usage, and governance via our Patient Engagement Team, with the vision of enabling patients to have the utility of their data maximized to further understanding and the development of new treatments.

GUIDANCE & EDUCATION for other rare disease stakeholders:

  • RARE-X will provide guidance, tools, and resources to researchers, industry, and others engaging with patients and patient communities.

INVESTMENT REQUIRED FOR THE  RARE-X DCP: 

  • RARE-X will NOT charge a FEE to patients/communities for data collection as part of the RARE-X Data Collection Portal Program (RARE-X DCP). 

RARE-X Diversity, Equity, and Inclusion Mission

RARE-X believes that diversity, equity, and inclusion is the core of our work. We strive to promote the advancement of inclusive rare disease communities that value diverse, innovative strategies to solving the complex needs of rare disease patients. We accomplish this mission by engaging rare disease communities, leveraging national multi-disciplinary partnerships, identifying best practices for collecting diverse data, and fostering an organizational culture of continuous internal reflection and proper adjustment to accomplish our vision.

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