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Assessing the information needs of Autoimmune Encephalitis Patients and Caregivers



Thank you for clicking on the link to answer this questionnaire!

Please read the following information carefully before deciding whether to participate.


What is the aim of this study?

This study is part of a doctoral project about making information easier to understand for people dealing with Autoimmune Encephalitis (AE) entitled "Information design as a vector in science communication: A co-design approach involving Autoimmune Encephalitis patients, their families, scientists, and medical professionals.” We want to investigate how to design information that helps patients and their families to better understand their medical condition.


For whom is this questionnaire and what is its goal?

This questionnaire is directed to patients, recovered patients and caregivers who are living or have lived with a diagnosis of Autoimmune Encephalitis. We want to understand the information that patients and family members need and what is important for them to understand about AE. This needs assessment includes their views on AE-related information: what is difficult to understand; what is important within this information; and the types of information sources used to search for AE.


What is the importance of this questionnaire?

The answers to this questionnaire will help us understand what patients and caregivers want and need to know about their medical condition. This will help us decide what topics to represent in illustrations for educational materials about AE. We will use this information in the next steps of our research, where we work with doctors, patients, and caregivers to create these illustrations together.


Who is conducting this study?

This is part of a project of the PhD student Ana Vasconcelos ( of Doctoral Programme in Experimental Biology and Biomedicine from the Institute for Interdisciplinary Research, University of Coimbra, Portugal and from CNC-UC - Center for Neuroscience and Cell Biology, University of Coimbra and CIBB – Centre for Innovative Biomedicine and Biotechnology, University of Coimbra, to whom you may contact if you have additional questions about this research. This work is supervised by the researcher Sara Amaral (CNC-UC and CIBB) and co-supervised by the researchers Susana de Noronha (Centre for Social Studies of the University of Coimbra) and Rita Maldonado Branco (Research Institute for Design Media and Culture (ID+), University of Aveiro, Portugal). This work is funded by the Portuguese Foundation for Science and Technology.


Do I have to participate in this study?

Your participation in this study is voluntary and you may refuse to participate. If you decide to participate, you will have the right to access, change, delete, oppose, and limit the processing of your personal data or to withdraw from the study at any time, without any reprisals and/or need to justify the reason. To exercise these rights, you should contact the researchers responsible for this study, to the following email address:


How will my participation in this study be?

Your participation in this study consists of completing an online questionnaire, about your information needs about Autoimmune Encephalitis. There are no right or wrong answers. If you accept to participate in this study, and after reading and accepting the informed consent, you can start to fill in the questionnaire. To do so, please click on “Next”. This questionnaire has an estimated completion time of 10 minutes. You can withdraw from the study at any time and for any reason by closing the questionnaire window. Participation in this study will be completely free, at no cost to the participant. This study does not provide financial compensation to participants. Your participation in the study does not include any risks for you.


How will my confidentiality be maintained?

Your responses and data will be strictly confidential, in accordance with applicable regulations and laws. All data will be uniquely identified with a code. The data collected will only be used for scientific research purposes, and will be safe and secure on Limesurvey® (hosted by UC), and will not be kept beyond the time needed for the study objectives. Only the researchers responsible for this study will have access to the data. Privacy and data protection are in accordance with the General Data Protection Regulation (GDPR) – Regulation no. 58/2019 of 08 August.