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.
Your opinion matters: take part in a questionnaire about Autoimmune encephalitis
Would you like to contribute to a project that aims to improve communication about Autoimmune encephalitis?
We are looking healthcare professionals to answer a short online survey.
This study is part of a PhD project supported by @genie_encefalites in the field of design applied to health communication.
What is the goal of this survey?
We are evaluating the illustrated leaflet ‘What is Autoimmune Encephalitis?’. We want to know if the leaflet helps to better understand this disease, if it is appropriate, engaging and if it reflects the experience of living with Autoimmune Encephalitis.
Who can participate in the professionals survey?
Healthcare professionals with experience in the diagnosis, treatment and/or follow-up of patients with Autoimmune Encephalitis.
Your opinion is essential to improve support materials that can make communication about Autoimmune Encephalitis clearer and more accessible.
Questionnaire for healthcare professionals: https://ls.uc.pt/index.php/655598?lang=en
At the end of the survey, you can download the illustrated leaflet in PDF format for free.
For more information about this study, please contact researcher Ana Vasconcelos: avasconcelos@cnc.uc.pt
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