October 20, 2020

The Niche

Knoepfler lab stem cell blog

Northwestern abruptly ending Burt HSCT autoimmune trials

HSCT Chicago Clinic Closing!” is the startling header in all caps on a patient-run Facebook page about a stem cell therapy clinical trial program at Northwestern University.

What’s going on?

Unfortunately, the promising field of hematopoietic stem cell transplantation (HSCT) for multiple sclerosis (MS) and other autoimmune diseases seems to have suffered an unexpected setback here.

Selma Blair HSCT Burt Instagram
Selma Blair post on HSCT via Burt team on Instagram.

Dr. Richard Burt of Northwestern, one of the leading figures in the area of developing HSCT approaches for MS and other autoimmune disorders, is going on a sabbatical and the university is abruptly stopping enrollment in his pioneering trials.

Everything seemed to be going so well.

The most recent published data were encouraging.

Also, the news just recently broke that actress Selma Blair had apparently gotten a HSCT from the Burt team for MS based on an Instagram post (below). In the caption she included “#hsct #drburt”. Talk about great, positive PR.

But just days later, things seem very different now.

The Facebook group with the url “burthsct” apparently in part administered by his past patients has the concerning news (see screenshot) about Burt’s sabbatical and the trials winding down in its new Description with that “Clinic Closing!” header.

Some patients have also independently contacted me about this puzzling, still developing situation. It seems that something radically changed with the program starting in the last month or two.

What’s the backstory here to explain such a dramatic possible end to what seemed to be a promising and very much still ongoing clinical research program at Northwestern? It really felt like things were going full-steam ahead.

I asked Northwestern for comment and spokesperson Christopher King made this statement:

“Northwestern Medicine is grateful for Dr. Burt’s dedication to providing patients with world-class care and wish him well as he transitions to his planned research sabbatical at the end of the year. While the immunotherapy program will no longer accept new patients, we will ensure that current patients continue to receive high-quality, compassionate care. Northwestern Medicine is grateful for Dr. Burt’s pioneering achievements in this field and the care he has provided to his patients. You may follow Dr Burt’s work though http://www.clinicaltrials.gov and through his publications.”

This doesn’t of course explain the “why” behind this news. Hopefully that will become clearer soon.

Richard Burt HSCT Northwestern FB page patients
Screenshot from Richard Burt HSCT Northwestern FB page run by patients.

I have had some past concerns about this program. As much as the idea of stem cells for MS and other autoimmune diseases is potentially exciting, and Burt’s work on partial ablation combined with HSCT for MS specifically has shown what seems to be real promise, in my opinion some thorny questions have remained unresolved over how the trials have been conducted.

As I was looking into all of this a couple years ago, Dr. Burt received an FDA warning letter regarding some issues including delayed reporting of patient deaths, although it seemed the program resolved the issues moving forward. You can read my past 3-part The Niche series from 2017 for more on my specific concerns here starting with part 1, which links out to parts 2-3.

I don’t know if the new development of the trials winding down and Dr. Burt going on sabbatical have anything to do with these past questions and concerns. Maybe the explanation relates to something else. However, my sense is that something major has likely happened here behind the scenes to lead to such an unexpected turn of events.

I’m worried that many patients could be negatively impacted by whatever is going on, and stressed by the uncertainty. This may also be a temporary blow the HSCT field, although other research groups are pursuing this kind of clinical work as well. It’s an area of real promise and hope for the stem cell field overall, in which Dr. Burt has been a pioneer.

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