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Sage Bionetworks

Nonprofit data-sharing platform for biomedical research

Senior Biomedical Research and Data Governance Analyst

Full-TimeUpdated on 10/23/2026
$93.3k - $121.7k/yr
Senior
Bachelor's
Remote in USA
RemoteRemote or hybrid arrangements are supported within the United States; travel at least twice yearly for on-site events in Seattle, Washington.
Risk & ComplianceRegulatory Compliance & Ethics, Privacy & Data Protection

About the job

Requirements
  • A bachelor's degree in a relevant field, such as life sciences, public health, public administration, or social sciences.
  • At least 7 years of professional experience in a research setting involving human biomedical data, such as clinical research in an academic, hospital, pharmaceutical, or related setting.
  • Demonstrated knowledge and experience with laws, regulations, and best practices related to working with human research data.
  • Experience preparing materials and submitting them to Institutional Review Boards (IRBs); human subjects research regulatory experience is foundational, and multi-site protocol experience is preferred.
  • Experience with legal language or review of data-sharing agreements.
  • Experience developing or improving Standard Operating Procedures (SOPs) or other process documentation for day-to-day tasks.
  • Knowledge of incident investigation processes, root cause analysis, and Corrective Action/Preventive Action (CAPA) plans.
  • Experience with documentation and task-management tools such as Google Suite, Microsoft Suite, Confluence, or Jira.
  • Written and verbal communication skills across audiences and mediums in a professional setting, including email, meeting participation, and presentations.
  • Understanding of F.A.I.R. data sharing and ethical research principles as they pertain to human biomedical research.
  • Digital literacy and ability to learn and apply new software and tools.
  • Ability to navigate ambiguity as project and business needs grow and change.
  • Ability to sustain focus and concentration during extended computer-based and reading-intensive tasks.
  • Ability to work effectively under deadlines, solve problems, analyze information, maintain attention to detail and accuracy, adapt to changing environments and priorities, and multitask.
  • Ability to sit at a desk and use a computer for extended periods, perform repeated wrist, hand, and finger movements, and have clear vision for tasks such as data analysis, transcribing, computer use, and reading; occasionally lift or move objects weighing up to 10 pounds.
  • Ability to travel at least twice per year for on-site events in Seattle, Washington.
  • Effective verbal and written communication skills; ability to work well in a team and maintain professionalism; ability to follow company policies, procedures, and relevant laws and regulations.
Responsibilities
  • Lead the development of policies, processes, and structures guiding and overseeing research design, data collection, analysis, and dissemination.
  • Collaborate with research consortia, scientific working groups, and institutional partners to support ethical, responsible, and accountable research and data sharing.
  • Design, implement, and champion governance systems that protect research participants’ rights and welfare and preserve the integrity of the scientific process.
  • Lead data-sharing initiatives by evaluating data sensitivity and designing and applying governance approaches, including data access controls.
  • Assess emerging privacy considerations and develop or update compliance methods to address current needs.
  • Monitor compliance with ethical, legal, and institutional requirements; contribute to incident investigations and corrective and preventative action plans; monitor activities and report to stakeholders.
  • Lead research, scientific community, and data governance initiatives addressing and enabling responsible application of AI and other developing technologies; promote AI tools for documentation, process improvement, and novel governance uses.
  • Develop and implement standards for data sharing and governance education; develop and sustain governance protocols and communicate updated standards through training materials and presentations.
  • Lead governance partnerships with internal teams and external collaborators; respond to data access requests and provide user support as needed; advise established research communities on data-sharing and governance frameworks.
  • Design and oversee implementation of governance frameworks and data privacy guidelines that account for evolving global regulations and ethical challenges.
  • Direct custom data governance systems and end-to-end execution of complex data-sharing agreements; lead internal and external investigations and contribute to high-level audit reporting.
  • Drive collaboration with internal and external partners to develop and negotiate data-sharing terms while maintaining organizational compliance standards.
  • Identify gaps across research, scientific community, and data governance and use AI and other emerging technologies to modernize governance workflows and documentation.
  • Lead and champion privacy and compliance training programs as a primary subject matter expert, communicating new standards and supporting operational continuity.
Desired Qualifications
  • Experience preparing Institutional Review Board (IRB) submissions for multi-site protocols is preferred.

About the company

S

Sage Bionetworks

View
Website

Sage Bionetworks is a nonprofit that coordinates data sharing and reuse to accelerate biomedical discoveries. It builds and supports open science infrastructure, including data commons and collaborative platforms, so researchers can access, contribute, and reuse biomedical data and workflows. Unlike many for-profit tech platforms, Sage Bionetworks emphasizes nonprofit governance, openness, and radical collaboration to foster transparent, reproducible science. Its goal is to drive a new age of discovery through truly open science and collective effort—Better Science Together.

Company Size

51-200

Company Stage

N/A

Total Funding

N/A

Headquarters

Seattle, Washington

Founded

2009

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Simplify's Take

What believers are saying

  • ARPA-H awarded Sage RAPID on August 31, 2026, expanding near-term cash inflow.
  • RDDC creates a benchmark dataset, positioning Sage as standard-setter for rare-disease AI.
  • Partnerships with Cirro Bio, Netrias, Stanford, and Northeastern broaden execution capacity.

What critics are saying

  • ARPA-H's up to $28.2 million award ends in 2031, pressuring replacement revenue.
  • Trump's 2026 federal payment freeze exposed Sage's dependence on government disbursements.
  • If RAPID misses diagnostic validation, Sage's flagship rare-disease platform loses credibility.

What makes Sage Bionetworks unique

  • Synapse stores 4.5 petabytes, giving Sage rare governed-data infrastructure depth.
  • ARPA-H named Sage prime for RAPID, proving federal trust in 2026.
  • Fifteen years building open, privacy-preserving biomedical data commons differentiates Sage.

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Benefits

  • Health Insurance
  • Dental Insurance
  • Vision Insurance
  • Life Insurance
  • Disability Insurance
  • Health Savings Account/Flexible Spending Account
  • Paid Vacation
  • Flexible Work Hours
  • Remote Work Options
  • Hybrid Work Options

Company News

Scientist Live
Sep 7th, 2026
Sage Bionetworks to develop data platform to accelerate rare disease diagnosis.

Sage Bionetworks to develop data platform to accelerate rare disease diagnosis. Published: 7 September 2026 The average rare disease diagnosis takes six years, with some waiting decades. More than 10,000 rare diseases affect around 30 million Americans, costing the US health system an estimated $1 trillion a year, despite only 5% having an approved treatment. Sage Bionetworks and the Advanced Research Projects Agency for Health (ARPA-H) are partnering to develop the Rare Disease Data Commons (RDDC), a central data repository and benchmarking platform for ARPA-H's new Rare Disease AI/ML for Precision Integrated Diagnostics (RAPID) program. RAPID is awarding Sage Bionetworks up to $28 million over 4.5 years to advance the program's goal to transform rare disease diagnosis, enabling patients to receive answers sooner while reducing costs for families and the health system. ARPA-H's RAPID program is split into four technical areas: * Assembling a large-scale longitudinal clinical dataset from electronic health records. * Collecting patient-reported data and other modalities such as genomics, imaging, video, voice, and wearable data. * Building the platform that ingests data from the first two areas, harmonises it, governs access, and benchmarks the diagnostic AI built on top of it. * Validating tools in clinical settings. Patient experience partners will work across all four areas throughout the program. The primary obstacle the RDDC addresses is the shortage of usable data. Rare disease data sits in separate institutions, coded differently, and governed under terms that must be renegotiated every time a new research group requests access. Robert Allaway, director of Rare Disease at Sage Bionetworks and Principal Investigator (PI) for the project, said, "Rare disease data are locked into islands. A foundation typically funds one disease, collects one data type, and the result doesn't connect to what the next foundation collected for the next disease. We proposed a platform that connects these islands into an archipelago, solving data challenges shared across the rare disease community once instead of ten thousand times." The RDDC will have five connected modules that bring in data from other RAPID teams and outside contributors, make it comparable across sources by building on tools created for the ARPA-H Biomedical Data Fabric Toolbox, and set rules for who can use it and how. Where data cannot be centralised, RDDC supports federated integration and interoperates with other trusted research environments instead of becoming another silo. Milen Nikolov, director of Product Innovation at Sage Bionetworks and co-PI for the project, said, "People living with rare diseases often drive their care odyssey, working closely with clinicians and researchers to gain insight into their diagnosis, connect to a community of others with similar conditions, and understand their prognosis and treatment options. The RDDC modules advance breakthrough technology - translating disjoint, multi-modal datasets into reliable information usable by patients, researchers and clinicians - throughout this odyssey and across all rare diseases." Jineta Banerjee, associate director of Advanced Data Analytics at Sage Bionetworks and co-PI for the project, said, "For rare diseases, where no individual dataset may ever be large enough, our greatest opportunity is to learn across boundaries of individual rare diseases. In the Rare Disease Data Commons, we aim to meaningfully connect datasets from multiple rare diseases to allow advanced computational methods to uncover shared and latent patterns that would help improve diagnosis or identify novel therapeutic opportunities." The most publicly visible deliverable is the Rare Disease Benchmark Dataset: a versioned, accessible resource designed to provide a common, credible basis for evaluation to researchers and developers working on diagnostic AI. Today, groups developing rare disease AI methods often evaluate on proprietary data, making it difficult to compare results or know which methods are worth clinically pursuing. The benchmark would enable standardised evaluation across the field while protecting patient privacy through de-identification, governed access, and appropriate data-use controls. Allaway said, "It's incredibly challenging to make apples-to-apples comparisons between AI tools for rare diseases. A group builds a model, reports on its own cohort, and there is no way to tell whether the next method is better or just due to differences in the test data. We are building a place where the evaluation is the same for everyone." Luca Foschini, president and CEO of Sage Bionetworks, said, "About one in ten Americans lives with a rare disease; many of them are still searching for answers, and they have been waiting a long time for infrastructure built to their scale. Building in the open while protecting privacy is a complex undertaking, but it's the only way we can create trust and share learnings for the benefit of all patients, rare disease and beyond." Sage Bionetwork develops and operates Synapse, one of the NIH-listed generalist repositories, managing more than 4.5 petabytes of biomedical research data. The RDDC builds on 15 years of Sage's experience developing governed data commons for sensitive biomedical data. Sage is building the Rare Disease Data Commons with Cirro Bio, Netrias, the Gyori lab at Northeastern University, the Alsentzer lab at Stanford University and the Undiagnosed Diseases Network Foundation.

National Capital Daily
Aug 31st, 2026
Undiagnosed Diseases Network Foundation named Patient Experience Partner for ARPA-H's groundbreaking RAPID program.

Undiagnosed Diseases Network Foundation named Patient Experience Partner for ARPA-H's groundbreaking RAPID program. UDNF to bring the voice and experiences of the undiagnosed community to a federal initiative aimed at transforming rare disease diagnosis. WASHINGTON, DC, UNITED STATES, August 31, 2026 /EINPresswire.com/ - The Undiagnosed Diseases Network Foundation (UDNF) today announced it has been selected as a Patient Experience Partner (PXP) for the Advanced Research Projects Agency for Health's (ARPA-H) Rare Disease AI/ML for Precision Integrated Diagnostics (RAPID) program - a landmark federal initiative designed to dramatically reduce the diagnostic odyssey for millions of Americans living with rare and undiagnosed diseases. RAPID is built on the question of "what if we could end the rare diseases diagnostic odyssey?". As a Patient Experience Partner, UDNF will bring the voice and experiences of the undiagnosed patient and family community to the researchers, technologists, and innovators working to solve the rare disease diagnostic challenge. UDNF will partner with Sage Bionetworks and its collaborators to ensure that the lived experience of patients informs the development and deployment of the Rare Disease Data Commons and RAPID's AI-driven solutions. Artificial intelligence is a powerful tool, but it cannot tell you what it feels like to spend a decade without a diagnosis, or why a family in a rural community can't access the specialist their child needs. UDNF will help bridge that gap, ensuring RAPID's data resources and platform are built not just for patients, but with them. "Serving as a Patient Experience Partner for ARPA-H's RAPID program is a profound recognition that solving the diagnostic odyssey requires more than science - it requires the voice, wisdom, and experience of the patients and families who live it every day," said Dr. Danielle Carnival, CEO, Undiagnosed Diseases Network Foundation. "UDNF exists to ensure that the undiagnosed community is not just the subject of research, but an active force shaping the solutions that will change lives." The Scale of the Problem More than 10,000 unique rare diseases affect over 350 million people worldwide, including one in ten Americans. For people facing a rare disease, the journey to a diagnosis is long, isolating, and costly. Families encounter more barriers than pathways and more questions than answers. Patients may see dozens of doctors and undergo countless tests before finally receiving a diagnosis. The diagnostic odyssey endured by rare disease patients lasts an average of six years but can go on for decades. Each diagnostic odyssey costs an average of $500,000 per patient and rare diseases cost the U.S. economy $1 trillion, annually. For families in the undiagnosed community, these numbers represent years of uncertainty, missed treatments, and an exhausting and expensive search for answers. It is estimated that half of all individuals with a rare disease remain undiagnosed or misdiagnosed, leading to inappropriate care, irreversible disease progression, and extensive medical costs. UDNF's Role as Patient Experience Partner As a RAPID Patient Experience Partner, UDNF will: Amplify patient and family voices to ensure that RAPID's diagnostic tools reflect the real-world needs of the undiagnosed community; Facilitate engagement by connecting RAPID program teams with patients, caregivers, and families who can provide input on research design, tool development, and deployment of new tools; Bridge the gap between cutting-edge AI research and the communities it is designed to serve, ensuring solutions are accessible, equitable, and patient-centered; Advocate for access to rare disease diagnosis, ensuring that underserved and underrepresented communities are included in RAPID's datasets and that tools are designed for use in communities across the United States A Turning Point for the Undiagnosed Community The RAPID program represents a pivotal moment in the fight to end the diagnostic odyssey. By harnessing the power of artificial intelligence and the scale of federal investment, RAPID has the potential to dramatically shorten the time from first symptom to accurate diagnosis - a transformation that could change the trajectory of millions of lives. "For too long, families have navigated the diagnostic journey largely alone - moving from specialist to specialist, repeating the same tests, and waiting years for answers," said Dr. F Sessions Cole, Chair, UDNF Board of Directors. "ARPA-H's RAPID program, with patient experience at its core, represents the kind of bold, innovative thinking that is needed to make progress toward UDNF's mission to end the diagnostic odyssey." UDNF's selection as a Patient Experience Partner builds on the organization's longstanding commitment to ensuring that patient and family voices shape the research, policy, and systems that govern rare disease diagnosis and care. Danielle Carnival Undiagnosed Diseases Network Foundation +1 202-240-2452 [email protected] Legal Disclaimer: EIN Presswire provides this news content "as is" without warranty of any kind. National Capital Daily do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author above.

Newsmatics Inc.
Aug 31st, 2026
Sage Bionetworks will build the data platform for a new federal program to accelerate rare disease diagnosis.

Sage Bionetworks will build the data platform for a new federal program to accelerate rare disease diagnosis. The Rare Disease Data Commons will unify fragmented patient data, establish privacy-protected benchmark datasets, and run community AI challenges Rare disease data are locked into islands. A foundation typically funds one disease, collects one data type, and the result doesn't connect to what the next foundation collected for the next disease." - Robert Allaway, PhD SEATTLE, WA, UNITED STATES, August 31, 2026 / EINPresswire.com / - The average rare disease diagnosis takes six years. For some families it takes decades. More than 10,000 rare diseases affect roughly 30 million Americans, cost the U.S. health system an estimated $1 trillion a year, and yet only about 5 percent have an approved treatment. Sage Bionetworks is partnering with the Advanced Research Projects Agency for Health (ARPA-H) to build the Rare Disease Data Commons (RDDC), the central data repository and benchmarking platform for ARPA-H's new Rare Disease AI/ML for Precision Integrated Diagnostics (RAPID) program. RAPID is awarding Sage Bionetworks up to $28 million over 4.5 years to advance the program's mission to transform rare disease diagnosis - helping patients get answers sooner while reducing costs for families and the health system. ARPA-H's RAPID program is organized into four technical areas. The first focuses on assembling a large-scale longitudinal clinical dataset from electronic health records. The second technical area will collect patient-reported data and other modalities: genomics, imaging, video, voice, and wearable data. Sage's team leads the third technical area, building the platform that takes data in from both, harmonizes it, governs access, and benchmarks the diagnostic AI built on top of it. A fourth area, will validate tools in clinical settings. Patient experience partners work across all four areas throughout the program. The primary obstacle the RDDC addresses is not a shortage of AI methods, rather, it is a shortage of usable data. Rare disease data sits in separate institutions, coded differently, and governed under terms that have to be renegotiated every time a new research group wants to work with it. "Rare disease data are locked into islands. A foundation typically funds one disease, collects one data type, and the result doesn't connect to what the next foundation collected for the next disease." says Robert Allaway, PhD, Director of Rare Disease at Sage Bionetworks and Principal Investigator (PI) for the project. "We proposed a platform that connects these islands into an archipelago, solving data challenges shared across the rare disease community once instead of ten thousand times." The RDDC will contain five connected modules that bring in data from the other RAPID teams and from outside contributors, make it consistent enough to compare across sources - building on tools created for the ARPA-H Biomedical Data Fabric Toolbox - and set clear rules for who can use it and how. Where data cannot be centralized, RDDC supports federated integration and interoperates with other trusted research environments rather than becoming another silo. "People living with rare diseases often drive their care odyssey, working closely with clinicians and researchers to gain insight into their diagnosis, connect to a community of others with similar conditions, and understand their prognosis and treatment options." says Milen Nikolov, PhD, Director of Product Innovation at Sage Bionetworks and co-PI for the project. "The RDDC modules advance breakthrough technology - translating disjoint, multi-modal datasets into reliable information usable by patients, researchers and clinicians - throughout this odyssey and across all rare diseases." "For rare diseases, where no individual dataset may ever be large enough, our greatest opportunity is to learn across boundaries of individual rare diseases. In the Rare Disease Data Commons, we aim to meaningfully connect datasets from multiple rare diseases to allow advanced computational methods to uncover shared and latent patterns that would help improve diagnosis or identify novel therapeutic opportunities." says Jineta Banerjee, PhD, Associate Director of Advanced Data Analytics at Sage Bionetworks and co-PI for the project. The most publicly visible deliverable is the Rare Disease Benchmark Dataset: a versioned, broadly accessible resource designed to give researchers and developers working on diagnostic AI a common, credible basis for evaluation. Today, groups developing rare disease AI methods often evaluate on proprietary data, making it difficult to compare results or know which methods are worth pursuing clinically. The benchmark would enable standardized evaluation across the field while maintaining strong protections for patient privacy through de-identification, governed access, and appropriate data-use controls. "It's incredibly challenging to make apples-to-apples comparisons between AI tools for rare diseases," says Allaway. "A group builds a model, reports on its own cohort, and there is no way to tell whether the next method is better or just due to differences in the test data. We are building a place where the evaluation is the same for everyone." "About one in ten Americans lives with a rare disease, many of them are still searching for answers, and they have been waiting a long time for infrastructure built to their scale," says Luca Foschini, PhD, President & CEO of Sage Bionetworks. "Building in the open while protecting privacy is a complex undertaking, but it's the only way we can create trust and share learnings for the benefit of all patients, rare disease and beyond." Sage Bionetwork develops and operates Synapse, one of the NIH-listed generalist repositories, managing more than 4.5 petabytes of biomedical research data. The RDDC builds on 15 years of Sage's experience developing governed data commons for sensitive biomedical data. Sage is building the Rare Disease Data Commons with Cirro Bio (https://cirro.bio/), Netrias (https://www.netrias.com/), the Gyori lab at Northeastern University (https://gyorilab.github.io/), the Alsentzer lab at Stanford University (https://alsentzerlab.org/) and the Undiagnosed Diseases Network Foundation (https://udnf.org/). Organizations interested in contributing data or testing methods on the platform can contact the Sage Bionetworks team at [email protected]. About Sage Bionetworks Sage Bionetworks is a Seattle-based 501(c)(3) nonprofit research organization founded in 2009 to drive a new age of discovery through open science and radical collaboration. Sage develops and operates Synapse, an NIH-listed generalist data repository, and has spent 15 years building governed data commons for sensitive biomedical data on behalf of the research community. Learn more at https://sagebionetworks.org. Funding acknowledgment This research was, in part, funded by the Advanced Research Projects Agency for Health (ARPA-H). The views and conclusions contained in this document are those of the authors and should not be interpreted as representing the official policies, either expressed or implied, of the United States Government. Robert Allaway Sage Bionetworks +1 206-928-8250 [email protected] Legal Disclaimer: EIN Presswire provides this news content "as is" without warranty of any kind. The MarCom Journal do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author above.

GeekWire
Jan 31st, 2025
Trump’S Push To Freeze Funding Leaves Researchers Anxious About Delayed Scientific Breakthroughs

Research photo from the National Cancer Institute, shared via Unsplash. (NCI Photo)When Luca Foschini, head of Seattle’s Sage Bionetworks, described the impact of the Trump administration’s efforts to freeze federal grants this week, it sounded like a run on the banks during America’s Great Depression.“[W]e woke up to the news that federal disbursements supporting our ongoing research would be frozen by 5 PM ET. Attempts to log into the system resulted in error messages for hours,” Foschini said in an email to the company’s followers. “Imagine your bank announcing that ATM withdrawals would be frozen within 24 hours — only for the machines to stop working as panic lines form.”President Trump’s Office of Management and Budget on Monday issued a memorandum putting a temporary halt on government payments on Tuesday, which was blocked by a federal judge before taking effect. The OMB on Wednesday rescinded the directive — but uncertainty remains.“This is NOT a rescission of the federal funding freeze. It is simply a rescission of the OMB memo