Are you a researcher or medical professional who can help with research?
If you are a medical professional or researcher who is interested in being involved in research, or have patients who may be potential study participants, please see the research calls below.
NEW: Patients needed for the The ExTINGUISH Trial of Inebilizumab in NMDAR Encephalitis (ExTINGUISH)
NEW CLNIC SITE OPEN: Rotterdam, The Netherlands
ExTINGUISH Trial is a Phase-2b, Double-Blind, Randomized Controlled Trial to Evaluate the Activity and Safety of Inebilizumab in Anti-N-methyl-D-aspartate receptor (NMDAR) Encephalitis and Assess Markers of Disease
What is Inebilizumab?
Inebilizumab is a promising therapeutic monoclonal antibody for the treatment of NMDAR encephalitis. This humanized monoclonal antibody against the B-cell surface antigen CD19 was recently shown to be safe and efficacious in the treatment of neuromyelitis optica spectrum disorder—another antibody-mediated disorder of the central nervous system. Compared to other off label B-cell depleting therapies, such as rituximab, inebilizumab not only depletes CD20+ B-cells, but also CD20- plasma blasts and plasma cells, resulting in robust, broad and sustained suppression of B-cell expression
Patient Criteria
- Currently open to those in the US and Rotterdam, The Netherlands at least moderately affected by NMDAR encephalitis
- US – aged 12 and up
- EU – will initially recruit from aged 18 and up
Clinicians are encouraged to use the Trial Hotline to discuss their patient: 844-4BRAIN5 (844-427-2465)
Find out more
Call for research centres worldwide to participate in INFECT-HEAD Study
You are invited to join the prospective international collaborative study titled “Defining the uncovered nature of infection-related headaches accompanying various infections: a prospective study (INFECT-HEAD Study).”
Aim of the study:
The aim of this study is to investigate the characteristics, time course, severity, and location of headaches associated with various acute systemic and local infections in adults over 18 years worldwide. In addition to examining phenotypic characteristics, the study will explore the relationship between simple infectious parameters (such as fever and CRP) and headaches. The information gathered will inform the treatment strategies in the future.
Criteria for inclusion:
A maximum of 2 researchers from each centre and 20 case entries per researcher. All patients with headache attributed to infection can be included, including all active infections in inpatients or outpatients.
Lead institution:
SBU Şişli Hamidiye Etfal Education and Research Hospital, İstanbul, Turkey
For more information and to join the study, please contact Assoc Prof Tuba Cerrahoglu Sirin on tubacerrahoglu@hotmail.com
Call for clinicians to participate in an online questionnaire
Are you a clinician with experience of Autoimmune Encephalitis?
If yes, please consider taking a few minutes to fill in this questionnaire: https://www.encephalitis.info/online-questionnaire/
Aim of the project: This project aims to investigate how to design information that helps patients and their families to better understand their medical condition. As a final deliverable, we wish to produce illustrated educational resources about Autoimmune Encephalitis, in a patient-centred approach.
Aim of the questionnaire: Gather the views of clinicians on topics related to communicating information to patients with Autoimmune Encephalitis – the challenges and opinions on topics more important and more difficult to communicate. For more information, please read the first page of the questionnaire.
Institution: Center for Neuroscience and Cell Biology, University of Coimbra, Portugal
Thank you in advance for your contribution to this project! (Ana Vasconcelos, scientific illustrator, science communicator, and PhD student at the University of Coimbra)