If our January meeting was about identifying the gaps in adrenal care, our March session was about building the bridge to cross them. With new members joining us from Spain, the UK, and Scandinavia, the Global Adrenal Testing Consortium is rapidly transforming from a bold idea into an international research force.
Here are the key milestones from our March 19th convening:
1. Formalizing Our Future: 501(c)(3) and Governance
We are thrilled to announce that our 501(c)(3) non-profit status has been officially submitted. This is a critical step that allows us to begin our $125,000 operational fundraising goal. These funds will sustain our work for the next year, ensuring we have the administrative backbone to manage global research trials.
Look for our formal announcement of Board Members and Charter Bylaws following our first Board of Governors meeting in April!
2. The PCORI Milestone
The Consortium is officially moving into the “Big Science” arena. We are currently finalizing our Letter of Intent (LOI) for PCORI (Patient-Centered Outcomes Research Institute). This application focuses on a Comparative Effectiveness Research (CER) study, which will directly compare current clinical lab methods against emerging real-time cortisol technologies.
3. Scaling Internationally
The “Global” in our name is earned. We’ve recently seen a surge in international interest:
- Scandinavia: Following a successful presentation at the NAPA meeting, members from across the Nordic countries have joined our workgroup.
- Europe & UK: We are collaborating with leaders from IAC and WAPO to ensure our testing standards reflect the needs of patients worldwide.
- Spain: We were honored to welcome representatives from Spanish advocacy groups, expanding our reach to Spanish-speaking patients globally.
4. Destination: Minneapolis (AIU Conference)
While our work often happens behind screens, the Consortium is headed to the Adrenal Insufficiency United (AIU) Conference in Minneapolis!
AIU Medical Liaison, Jason, will be presenting on tactical planning for the Consortium. Look for our posters featuring QR codes—you can scan them right at the booth to join our LinkedIn workgroup or contribute to our research fund.
Workgroup Spotlight: The Science of Measurement
A special thanks to our member Lucy, a biochemist in the pharmaceutical space, who has volunteered to lead a deep-dive research project into current clinical bioassay methods. Her findings will help the Consortium select the most reliable platforms for our upcoming validation studies.
How You Can Help
As we prepare for our next meeting on May 21st, we are looking for volunteers in two specific areas:
- WordPress Design: Help us polish our digital home.
- Grant Writing: Assist us in securing the “Convening Awards” that fund our collaborative sessions.
Stay Connected: All participants from the March meeting now have access to our Shared Google Drive. For those who haven’t joined yet, please head over to our LinkedIn Consortium Workgroup—it is our primary hub for updates, news, and meeting links.
