August 15, 2020

The Niche

Knoepfler lab stem cell blog

patient advocates

1 min read

CIRM is holding a meeting today on how to respond to the IOM recommendations on CIRM operations. I’m a CIRM grantee who is live blogging this meeting. My opinions are my own. The IOM, amongst other things, recommended that patient advocates on the CIRM Board not be allowed to be voting members of the CIRM Grants Working Group (GWG). CIRM proposed today essentially following IOM’s recommendations on patient advocates losing their vote on the GWG. Board Member Jeff Sheehy raised what I concur are …Read More

2 min read

This is the first in a new series of posts I’m doing in lessons I’ve learned from the ever-increasing number of patients who contact me directly or are readers of this blog who make great comments. Today’s post is focused on the lack of availability of and exclusions of the vast majority of patients from clinical trials, an issue that I believe many stem cell researchers are largely unaware of at this time. The standard advice in the stem cell field is to encourage …Read More

2 min read

CIRM Board Member, Jeff Sheehy, has a wonderful piece in Nature Medicine on why patient advocates play a critical role in decision making on research priorities (hat tip to Amy Adams who first blogged on Sheehy’s piece). Patient advocates bring a unique and valuable perspective to the table. Their role in guiding CIRM research funding decisions has had a clear impact. Scientists must be advocates too. Traditionally, scientists have not been comfortable acting as advocates, but in the current environment scientists must take action …Read More