How CODA is accelerating research to find answers for complex disorders sooner
The Next Chapter: CODA—Where Patients Lead, and Progress Follows
As I learned quickly with Grace, complex disorder patients were lacking a well-organized research network of experts and a true research model to move the space forward faster—one built to handle different patient symptoms with no true explanation, speed up understanding of the interconnectedness of different systems, and deliver real impact. That’s exactly what CODA does.
CODA came into being because a very strong, determined patient leader - Fidji Simo - knew something more had to be done. Much more.
Fidji is a prominent CEO of one of the most innovative companies in the world. She’s led formidable workforces and solved complex problems at a scale few can imagine. she also battles POTS, endometriosis, chronic pain, and exhaustion and knows what it feels like to have your life completely upended by chronic illness—to face uncertainty, fear, and the devastation of not getting better.
She knows what it’s like to not be able to find the right answers in a system that isn’t built for you.
During Fidji’s health battles, she became a mom to a beautiful young daughter. She carries the same fear every parent facing illness knows: the fear it could find her child someday. She’s driven to change that. To do everything it takes to build a different future — one where her daughter, and every child, has a better chance. Read a letter from Fidji about the CODA mission.
As CEO of Instacart and an expert business and technology leader, Fidji’s visionary leadership brings something unique to the complex disorders community: a guiding force, a fierce, innovative acumen and mindset shaped by businesses building at scale, using latest technologies, uniting talent, and delivering solutions.
When faced with these illnesses, she lived the same challenges as my family, as millions of patients, and came to see firsthand that care didn’t have the tools patients needed day in and day out. That a “flare” could derail moments, days and longer. And to change the trajectory for patients, we’d need to take the future into our own hands. Build a research model for complex disorders.
Because of the complexity of these conditions, Fidji understands CODA couldn’t start from scratch and we’d need to find a way to move faster. idji made sure to learn from the pioneering patient leaders who had build successful research models in other diseases - cancer, Parkinson’s, ALS, and more.
Fidji studied these models. Intensely.
She started asking questions of every biotech and pharma leader she could find: “Why aren’t you prioritizing treatments for these conditions, despite the enormous market?” The answer was always the same—there wasn’t enough information on these patients and without it, scientists couldn’t move on a large, coordinated scale. We needed more. More data. Richer datasets. Enhanced technologies. A clinical network of experts. Funding. A deeper understanding of patient biology. Funding. Without these things in a well-coordinated system, scientists.couldn’t move at the pace this massive, complex patient population needed.
She set out to change that—with CODA.
In other diseases, patients led a revolution. Now it’s time to bring that same revolution to complex disorders.
I didn’t know it yet, but everything I’d learned in oncology research was about to become deeply personal.
While Fidji was engineering a new system, my daughter’s reality was getting brutally harder. Grace was now a young adult in her early 20’s and had suffered greatly. We somehow patched enough care together so she could head to college - and it was a gift she fought hard for, with many trial and error medications, hospital stays, and countless doctors’ visits to get her somewhat stable. Her months at school, were interrupted by sudden, unexpected downturns in her health, followed by months at home. We’d get her back on her feet and her symptoms crept in, it was a roller coaster ride everyone in this space understands.
Here’s where a bit of professional fate steps in. Right before Grace got sick, I had pivoted from financial services to nonprofit - oncology research specifically. And while Grace was battling her condition, I worked as Senior Advisor to one of the most pioneering and expert leaders in disease research—Kathy Giusti, a patient trailblazer, founder of the Multiple Myeloma Research Foundation, leader of the Kraft Precision Medicine Accelerator and author of Fatal to Fearless.
Diagnosed at 38 with a fatal blood cancer and given three years to live, Kathy built the MMRF like a biotech startup and ran it like a Fortune 500 company. First to build a collaborative tissue bank, first to sequence its cancer genome, first to run a dedicated clinical network, the MMRF conducted nearly 100 trials and helped launch more than 15 new drugs. The result: patient lifespan tripled—and the way research was done was forever changed. A model was built. I was literally training from one of the most respected research leaders of our generation. I need I had to try to do more for Grace and our patients.
I had seen what was possible with Kathy and the MMRF. I knew a disease model like this one was the answer.
As a 2nd turn of fate would have it, I read an article profiling Fidji’s leadership and vision as a patient for patients. I inboxed her on LinkedIn. Would she talk? She had been following Kathy’s work and knew how critical it was. I jumped at the chance to join Fidji—driven by a belief in her as a patient leader, a shared vision, and an urgency to act. We deep dived further and further into what worked in cancer, Parkinson’s, cystic fibrosis, and ALS. Again and again.
In addition to data-driven research, we learned from others an important tenet of progress. Silos don’t serve patients. Collaboration does. There is too much to accomplish. And we need to move fast. That’s what we’re building: an ecosystem where scientists, clinicians, technologists, advocates and patients come together to accelerate research, improve diagnostics, and finally develop effective treatments for the people that have been neglected for far too long.
It’s an alliance.
CODA: the promise for patients, now.
We’ve taken the lessons learned from those models and applied them to the tools of today—AI, machine learning, advanced multi-omics, and real-world data integration—to move faster and go deeper. These technologies help us identify hidden patterns, stratify patient populations, uncover biomarkers, and accelerate drug repurposing.
The CODA Catalyst is a system designed to deliver actionable insights and tangible outcomes for individuals living with complex disorders. It's a comprehensive approach that moves from suffering to solutions:
Start with the patient.
Grounding everything in lived experience, unmet need, and what success looks like for the people we serve.Collect the right data.
Massive amounts, well-characterized—from patients, biobanks, EHRs, wearables, clinical records, and lived experience—to build a foundation that reflects real-world complexity.Analyze that data deeply.
Using the latest technologies, we uncover biomarkers, decode disease mechanisms, and launch rigorous studies that drive clinical trials, drug repurposing, and real treatments.Engage the best minds in science.
We’re building an alliance of experts—foundations, academic centers, researchers, clinicians, technologists, and patients—all focused on solving complex disorders together. For too long, science has been fragmented. CODA is breaking down silos and uniting the people who can drive real change.Turn insights into action.
New diagnostics. New treatments. A path to cures.
And it’s working.
CODA in Action
In our very short history, here’s what we’ve made happen to date:
Launched MetX, a landmark study at Metrodora Institute that established a patient registry, biorepository, and the core infrastructure needed to support future multi-omics research in complex disorders.
Initiated MELO, a collaborative study with Metrodora Institute and PrecisionLife, combining patient-reported data and genomic analysis to identify risk factors and disease subtypes—laying the groundwork for potential diagnostics and drug targets for ME/CFS and Long COVID.
Published our first preprint, in collaboration with PrecisionLife, using the NIH’s All of Us dataset to successfully reproduce key genetic risk factors for Long COVID across diverse populations.
Conducted a data landscape analysis, which we’ll be sharing soon.
Built new partnerships with leading researchers, clinicians, and foundations focused on solving complex, understudied conditions.
And we’re just getting started.
This Is About All of Us
Grace is my daughter, and she’s my first reason to fight. But now, we have millions more. Fidji is a patient and she knows her daughter needs protection from the future. We both feel a tremendous responsibility to help the millions of patients who need progress.
These are our daughters. Our sons. Our parents. Our friends. People who were healthy—until they weren’t. People who fight every day for answers, for dignity, for a system that sees them.
They deserve more.
CODA is here. But we can’t do this alone.
This is your call to action:
If you’re a patient—join us.
If you’re a family member—stand with us.
If you’re a doctor, scientist, donor, or someone who refuses to accept the status quo—this is your fight, too.
Progress doesn’t happen by accident. It happens when expert, coordinated research meets the relentless resilience of patients.