Toyosi Onwuemene/LinkedIn;Theresa Coles/populationhealth.duke.edu

Aug 1, 2026, 07:51

Toyosi Onwuemene: Are We Measuring the Outcomes That Matter Most to Patients With TTP?

Toyosi Onwuemene, Associate Professor with tenure Duke University School of Medicine, shared a post on LinkedIn:

“What if the outcomes we celebrate aren’t the ones that matter most to the people living with the disease?

We celebrate our success in helping most patients survive TTP.

But our patients tell us survival is no longer enough.

They want to think clearly, return to work, and remain engaged with their loved ones.

Yet they experience cognitive changes—brain fog, memory lapses, and slowed thinking.

In response, Dr. Theresa Coles and I set out to answer a simple question:

‘How do we measure cognitive changes in TTP?’

Our patients challenged us with a better question:

‘How do you measure what we’re actually experiencing?’

That question became the foundation of the THINK-TTP study.

The THINK-TTP study reinforces an important lesson: listening to patients isn’t just part of the research process. It shapes the research itself.

If we want truly patient-centered research, we start by asking patients what outcomes matter most to them.”

Toyosi Onwuemene: Are We Measuring the Outcomes That Matter Most to Patients With TTP?

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