Global Adrenal Testing Consortium
The Global Adrenal Testing Consortium is currently hosted at United4Rare while we complete the early stages of formalizing the consortium as its own nonprofit organization.
This transition reflects the growth of the consortium and our commitment to building a dedicated, mission-centered home for this work. Establishing an independent nonprofit will support clearer governance, stronger transparency, and more sustainable funding for convening, coordination, and patient-centered research planning.
Our mission remains the same:
to advance adrenal testing through patient-centered collaboration, standards development, and evidence-informed research priorities that improve care, safety, and quality of life.
The consortium brings together patients, caregivers, clinicians, researchers, advocacy organizations, and industry stakeholders to identify shared priorities and help shape the future of adrenal testing in a way that is ethical, practical, and grounded in real-world need.
As this transition moves forward, the consortium will continue operating and convening in its current form. We will share updates here as nonprofit formation, governance planning, and independent infrastructure (including a dedicated website presence) are established.
Thank you to everyone helping build this work with care, rigor, and a shared commitment to the adrenal community.
Global Adrenal Testing Consortium
The Global Adrenal Testing Consortium (GATC) is a patient and stakeholder-led collaborative focused on advancing understanding, measurement, and outcomes research in adrenal insufficiency. Our goal is to bring together patients, caregivers, clinicians, researchers, and community partners to define what matters most in testing, monitoring, and clinical care for people living with adrenal insufficiency.
Why This Consortium Matters
People with adrenal insufficiency often face unpredictable changes in cortisol levels. Current testing approaches are episodic and can miss critical changes in daily life or crises. There is a need to better understand how improved monitoring strategies could impact patient-centered outcomes such as crisis prevention, emergency care, quality of life, and daily functioning.
The Consortium exists to ensure that future research prioritizes the voices and experiences of patients and caregivers, and that research questions reflect real world needs.
Current Focus: Patient-Centered Research Planning
GATC is now entering a structured research planning phase focused on defining patient-centered priorities for comparative clinical effectiveness research. In this context:
• We are working to identify the outcomes that matter most to patients and caregivers
• We are defining research questions that can meaningfully inform future studies
• We are exploring how real-time monitoring approaches could be evaluated against current testing practices
• We are planning collaborative activities and convenings to engage diverse perspectives
This work follows guidance from the Patient-Centered Outcomes Research Institute (PCORI), which has invited the Consortium to submit a Convening Support Letter of Intent to formally structure discussions around patient-centered comparative clinical effectiveness research in adrenal insufficiency.
Collaborations and Institutional Engagement
We are actively engaging with clinical and research partners to explore scientific and validation pathways. The Wyss Institute is one such partner with whom discussions are ongoing about how best to align research planning with meaningful outcomes for patients.
How the Consortium Works
The Consortium is open to patients, caregivers, clinicians, researchers, and other stakeholders who bring lived experience and commitment to this work. Our approach emphasizes:
• Inclusive, patient-led governance
• Shared decision-making
• Respect for diverse healthcare perspectives
• Focus on real world problems and solutions
Activities and Opportunities
The Consortium facilitates:
• Structured convenings and meetings
• Working groups to define outcome priorities
• Stakeholder engagement activities
• Roadmap development for future patient-centered research
• Community feedback and contributions to research planning
Our next meeting on March 19, 2026 will focus on defining priorities to inform the forthcoming PCORI Convening Support Letter of Intent, due March 30.
Join Us
If you are interested in participating, contributing your voice, or learning more about upcoming activities, please contact us or sign up to receive updates.
Register for Consortium meetings:
Consortium Sponsors and Supporters
The Global Adrenal Testing Consortium welcomes mission-aligned sponsors, including foundations, healthcare organizations, academic institutions, and industry partners who support patient-centered research planning in adrenal insufficiency.
Sponsorship supports:
• Multi-stakeholder convenings and structured meetings
• Accessibility and participation support for patients and caregivers
• Development of patient-centered research priority roadmaps
• Educational materials related to comparative clinical effectiveness research
• Administrative coordination and engagement infrastructure
The Consortium maintains full independence in defining research questions, engagement priorities, and convening outcomes.
Industry partners may provide financial or in-kind support; however, sponsors do not influence research priorities, study design discussions, or future comparative research frameworks. Sponsorship does not constitute endorsement of any product, technology, or commercial entity.
All sponsors are acknowledged publicly unless anonymity is requested. Transparency regarding sponsorship relationships is maintained in accordance with best practices for multi-stakeholder collaborations.
The Consortium is currently focused on convening, engagement, and patient-centered research planning and does not conduct research studies during this phase.
Detailed sponsorship opportunities are available upon request.
If your organization is interested in supporting patient-centered comparative research planning in adrenal insufficiency, please contact kirsten@united4rare.com
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The Global Adrenal Testing Consortium is a mission-centered, patient-led nonprofit convening body focused on improving adrenal testing through collaboration, standards development, and patient-centered research planning.
CortiCheck™ is a separate initiative that is being structured independently for potential future commercial development, subject to scientific validation, safety, feasibility, and clinical utility.
To protect the integrity of both efforts, the consortium and CortiCheck™ are being developed with purposeful structural separation and transparent governance practices.
Key principles of separation and integrity:
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The consortium exists to serve the public-interest mission of improving adrenal testing and patient outcomes, not to advance any single company or product.
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Participation in the consortium does not constitute endorsement of any specific technology, company, or commercial pathway.
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Consortium discussions, priorities, and outputs are intended to support the field broadly and to reflect patient-centered, evidence-informed collaboration.
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CortiCheck™ does not have exclusive rights to consortium ideas, discussions, priorities, or participation.
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Any potential collaboration, transaction, or formal relationship involving CortiCheck™ and the consortium will require full disclosure, conflict-of-interest review, and independent approval by disinterested nonprofit decision-makers.
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Individuals with roles in both efforts will disclose those roles and recuse themselves from decisions where a conflict exists.
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Funding, governance, operations, communications, and decision-making for the consortium and CortiCheck™ are being separated intentionally as each entity formalizes its independent structure.