Meet Dr. Juna de Vries!
May 20, 2021
Dr. Juna de Vries (Erasmus University – The Netherlands) has been awarded the AEA Community Seed Grant to investigate the Patient Reported Outcomes while Manipulating the Immune System in autoimmune Encephalitis. Learn more about her study and how this will affect those affected with autoimmune encephalitis.
You have been awarded the AEA Community Seed Grant, can you tell us more about the study you plan to do?
First of all, I want to express my gratitude for being awarded for the Seed Grant provided by the AEA Community. Also, on behalf of our research team led by Maarten Titulaer at Erasmus MC in Rotterdam the Netherlands.
At the moment we are working on the implementation of The PROMISE study, which is an acronym for ‘Patient Reported Outcomes while Manipulating the Immune System in autoimmune Encephalitis ’. The aim of this study is to determine the clinical outcome and disease burden in treated patients with autoimmune encephalitis in the months and years after diagnosis. We want to measure cognitive outcome, fatigue, effects on mood, behavior, daily-life functioning and quality of life.
We are currently developing the questionnaires, and based on the current literature and our expert opinion we pre-selected a set of questions covering the aforementioned outcomes. This April 30th we had a very valuable focus group meeting with 12 patients with anti-NMDAR, anti-LGI1 or high titer anti-GAD65 encephalitis. In this group conversation they told each other about the impact the encephalitis still has on their lives, which was very moving to hear. We noted the items mentioned in this meeting, and added the missing items to our set of questionnaires.
First, we will start with a cross-sectional estimation of clinical outcome and disease burden in the Dutch population of patients aged 16 years or older with autoimmune encephalitis. Besides the questionnaires we also will complete a neurological examination, the mRS, the CASE and a neuropsychological test. From these data we will select the relevant items in the questionnaire to create a shorter questionnaire encompassing the different domains e.g. functionality, quality of life, behavior, mood, and fatigue, which can be used in the prospective phase of the study.
We aim to provide a questionnaire that takes approximately 40-80 minutes to complete. With this slim version of the questionnaire we are going to follow-up newly diagnosed patients with autoimmune encephalitis or a fairly recent diagnosis, meaning in the last two years. These patients we will measure over time for several years.
How will your study help patients and families affected by AE?
By estimating the clinical outcome and disease burden in autoimmune patients more precisely, awareness is raised for the residual symptoms these patients suffer. This will lead to more targeted rehabilitation programs to support patients as best as possible. Furthermore, we as physicians can better inform the patient and their caregivers about what to expect from the future.
Another goal is to use these outcome measures in clinical trials or patient registry comparisons. By measuring clinical outcomes in a standardized way, studies will be able to measure outcomes relevant to the patient. As these items are more sensitive and statistically powerful, trials can contain less participants, highly increasing trial options in these rare diseases and providing earlier tailored care for the patients. This will optimize the care for the autoimmune encephalitis patients in the future.
Tell us more about yourself and your affiliation?
In May 2018 I started my fellowship in neuro-immunology at the group of Maarten Titulaer at the Erasmus MC in Rotterdam, the Netherlands and specialized in autoimmune encephalitis. Since May 2020 I work there as a neurologist. My focus is on clinical care for patients with autoimmune encephalitis and other neuroinflammatory diseases. Besides my clinical work, I also perform clinical research in the field of autoimmune encephalitis. My goal is to improve the care, future perspectives and treatment strategies for patients with autoimmune encephalitis.
I am married with Eric van Breda, who works as a psychiatrist, and together we have three children, Fedja 7, Amelie 5 and Lucy almost 1 year-old.
Together, we are changing the course of AE.
The Research Network funds research that has a direct impact on those affected by AE. We have two generous donors that will match any donation you make to the Research Network, up to $15,000.
