TOGETHER WE WILL SEARCH FOR BETTER TREATMENTS THROUGH SCIENTIFIC RESEARCH
Research Protocols -Recruiting
The following research studies are recruiting patients. The studies have been reviewed by the FND Hope peer review board, and all studies listed have met the requirements of the researcher’s Ethical Review Board. FND Hope peer review board does review and approve all research studies. While FND Hope does its best to review studies listed, the protocols may reflect terminology or concepts we as an organization may not agree with. However, we believe all avenues of research should be explored as long as the study is completed with integrity and in the best interest of FND science. Research protocols are not approved and therefore not listed if we determine there may be a physical or emotional risk to our FND community.
Functional Seizures and Work Questionnaire (International Participants)
The following questionnaire is to seek the opinion of those with a lived experience regarding work. FND Hope is working with researchers at Yale School of Medicine to conduct a survey of some of the social issues related to functional seizures [also called psychogenic nonepileptic seizures (PNES) or dissociative seizures or nonepileptic attacks, episodes, events]. The term seizure in this instance does not refer to seizures that are Epileptic.
Please complete our survey here.
Joint Hypermobility in Functional Neurological Disorder (International Participants)
Brief Project Description
We would kindly request the participants of our project ‘Joint Hypermobility in Functional Neurological Disorder’ to help us one step further by also forwarding a survey link to a friend who doesn’t have FND, and who is ideally of the same gender and similar age. This is optional. This is so we can have a group of participants without FND for comparison.
Participation in the survey is voluntary.
This study has been approved by Austin Health Human Research Ethics Committee (HREC). HREC Reference number: HREC/57180/Austin-2019. The contact details for the study team and Austin Health HREC can be found in the link below.
Please complete our survey: https://www.surveymonkey.com/r/MMCJBW3
Exploring emotional responses to life events in individuals who experience functional seizures (FS).
Brief Description: The main aim of this research is to gain a better understanding of how people with functional seizures/non-epileptic seizures/dissociative seizures describe and experience life events, and how they describe feeling at the time of the event. Life events are usually referred to as major or important events, and examples of these include moving house, changing jobs, having an operation or unexpected hospital stay, getting married. We are interested in people who have experienced at least one life event in the past 12 months.
If you are interested, please click on the following link which will provide additional information and a Consent form https://medicinehealth.leeds.ac.uk/medicine/pgr/3952/shaista-meer
Medically Not Yet Explained Symptoms (MNYES) Priority Setting Partnership Partnership Survey (UK Participants only)
Brief Description: We are asking everyone involved – patients, caregivers and healthcare professionals –what research questions need answering to improve care and the treatment of medically not-yet-explained symptoms. We are starting with this short survey which may take you 10 minutes to complete but also has space for you to answer questions more fully if you’d like to. There is the option at the end of the survey to take part in the next stage (voting on the longlist in a few months) as well. If you have any queries please email JLA-MNYES@york.ac.uk
If you are interested in completing the survey please do so here: https://york.qualtrics.com/jfe/form/SV_1LdGIB0MF6Z4iCV.