James Lind Alliance

They have very important criterias that have been established by patients.

So we went through a process to look at the patient priority research, PSP patient-supported research, through the James Lind Alliance to identify what are the key questions that are important for patients to be addressed in research.

So it's not us sitting around a table, my team or a few patients saying this is what's important.

It's really a vetted process to identify these key questions.

And so, like, the possibilities are tremendous.

Levan, the James Lind Alliance on this exact idea.

And there's 20 giant themes that we could probably answer and take many careers to help figure out.

And so what's next to better improve this? I'm not a nutritional researcher, so I'm not going to be the best person to ask that.

No.

Using the James Lind Alliance methodology, it brought together not just surgeons, but patients, their carers, and a global network of multidisciplinary professionals to agree on the top research and clinical priorities for the disease.

Getting everyone in the same room.

What was fascinating and quite telling was that raising awareness and improving diagnostic criteria ranked at the very top of their priorities.