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Barry McGrath's avatar

Dr. Janet Woodcock:

"It turns out that what is really bothering the patient

and what is really bothering the doctor can be radically

different things….patients are true experts in their

disease”.

“It's clear you have to start with an understanding of

the impact of the disease on the people who have it,

and what they value most in terms of alleviation before

you set up a measurement and go forward with truly

patient-focused drug development."

PDUFA V Clinical Outcome Assessments Public Workshop, April 1, 2015

THINKER, SAILOR, JOKER, WRY.'s avatar

Thank you and yup!

HS is a 🦽 before the 🐎 disease (could not find a cart emoji, sorry).

In other words, doctors invented a 🪂 before they invented the ejection seat that sent the escaping pilot up and through the rotor blades of the 🚁 which had not yet been invented.

THINKER, SAILOR, JOKER, WRY.'s avatar

DeepSeek V4 PRO

“Remember — Aug 23, 2025

A corrective to institutional amnesia.

Howes documents that NIH first funded HS basic research in 2012 and first funded HS researchers in 2009 — via the founding HSF president — and that it took a person with HS (Michelle Barlow) to get HS on the NIH radar.

He also notes that the first NIH grant for HS research was not 2019, as some publications claim.”