✋ 🛑 We must do better.

If available clinical trials are not discussed and offered to patient/loved ones BEFORE immunotherapy is given, then it is NOT informed care.

KNOWLEDGE = POWER

@extinguishtrial

5/fin

👉Early use of first- and second-line immunotherapy has increased since 2019 but functional outcomes have only improved modestly since 2019.

And yet, patients are often subjected to the full “kitchen sink”of immunotherapies, often without any time given to assess effect 🤔
4/

We evaluated changes in treatment strategies and outcomes in NMDAR Encephalitis since the previous comprehensive review in 2019.

👉No significant change was noted in mortality or relapse rates!

3/

In NMDAR Encephalitis, equipoise may be obscured by undue weight assigned to treatment recommendations based on expert opinion. 🧐

Although helpful in framing an approach, “consensus guidelines” may unintentionally obfuscate the need for high quality studies.

2/

The Trial infrastructure would not be possible without the support of the National Institute of Neurological Disorders and Stroke (NINDS) via the NeuroNEXT Clinical Trial Network.

About the ExTINGUISH Trial:

youtu.be/dIhD8y-hyPM?...

With gratitude, we thank everyone who is doing the unseen work for the trial participants - for the hours spent navigating bureaucratic challenges, for the nights, the weekends, the road trips 🚗 for house calls…

-The devoted ExTINGUISH team -
consisting of so many study coordinators, data/trial/regulatory/ethical experts, pharmacists, lab specialists, statistical experts, nurses, physicians and patient advocacy groups -
dedicate themselves to getting answers and resources for these patients. ❤️

One patient at a time, we are getting closer… closer to one day being able to tell patients and families with certainty that what we propose for treatment options actually have strong evidence behind them… Right NOW, there are *finally* clinical trials available as an option for patients 🙏

📣 We are able to offer the trial to affected adolescents and adults — new NMDAR Encephalitis patients age 12 and up have access to the Trial resources 🤝

📣 No matter where in the US, we will get patients access to the trial - just call the hotline

#NeuroSky #AcademicSky
#PedsSky #MedSky

We see you ❤️💔