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.
Thank you.
Recruiting
INTEGRATION OF SPECIALISED SERVICES FOR EATING DISORDERS AND FUNCTIONAL SYMPTOMS IN CHILDREN AND YOUNG PEOPLE, A MIXED METHODS STUDY (THE CENT STUDY)
Have your say in how services should be organised for children and young people with functional symptoms.
CENT is a research study which aims to investigate the integration of physical and mental health services for children and young people with eating disorders and functional symptoms. The study is funded by the National Institute for Health Research and is being led by researchers at the University of Cambridge and University College London, along with the Nuffield Trust, and others.
We are currently looking for parents and carers to share their priorities and views about the integration of care for children and young people with functional symptoms, via our online survey. For most people, the survey will take around 10-15 minutes to complete. The findings will be used to make recommendations with the aim of influencing policy.
Complete an online survey now: qhweb.co.uk/DCFSPA
OUTPATIENT MANAGEMENT OF PEDIATRIC FUNCTIONAL SEIZURES
The purpose of this study is to survey families and experts to determine the best strategies for taking care of children with Functional Seizures. Specifically, we want to learn what families consider most helpful for including in a multidisciplinary clinic (MDC) for pediatric Functional Seizures. A multidisciplinary clinic includes providers from different specialties who see the patient during the same visit.
TAKE PART IN THE REEFS STUDY
The Researching Environmental Exposures in Functional Seizures Study
Dr. Laura Strom and her team are conducting an online research study looking at the pre-onset physical and social exposures of individuals with Functional Seizures also known as Non-Epileptic Seizures, Psychogenic Non-Epileptic Seizures, Non-Epileptic Attack Disorder, and Dissociative Seizures
You may be eligible if you have been diagnosed with Functional Seizures, are 18 to 50 years old, are not currently pregnant and live in the US or Canada
ACHIEVING INCLUSIVE DESIGN: WHAT ARE THE BARRIERS TO ACHIEVING EFFECTIVE REGULATION AND GOOD-QUALITY INCLUSIVE DESIGN?
Accessibility is not at the forefront of architectural planning but sustainability is. This survey explores the extent to which this is true, and highlights the barriers to accessibility that many people face currently. Anyone with a disability, or anyone who cares for someone with a disability can participate. The survey consists of a 15-30 minute questionnaire asking about your disability, accessibility to various places, regulations, and sustainability opinions.
CONTENT OR CONTEXT? A BRIEF INTERNET-BASED INTERVENTION FOR PATIENTS WITH NEWLY DIAGNOSED FUNCTIONAL SEIZURES
We’re conducting a study to see if delivering a brief intervention program in different ways has an effect on the number of functional seizures people have.
See flier HERE for more information
SELF-MEDICATION FOR FUNCTIONAL NEUROLOGICAL DISORDERS USING PSYCHOACTIVE SUBSTANCES: A QUALITATIVE INVESTIGATION
The purpose of this study is to better understand how those with Functional Neurological Disorder (FND) self-medicate with “psychoactive” drugs, such as magic mushrooms, LSD, MDMA/ecstasy, and cannabis. We are looking to find out in detail whether these drugs might have an effect on FND symptoms. This is to understand why people might self-medicate for FND, and it may help us to design medical trials for psychoactive substances such as psilocybin in the future. Interested participants will need to complete the Qualtrics pre-screening questionnaire (PIS and Informed Consent) and will be contacted by the research team for a follow up phone screening and scheduling of the qualitative interview.
See flier HERE for more information
UNDERSTANDING RISK FACTORS AND SYMPTOM TRIGGERS IN FUNCTIONAL NEUROLOGICAL DISORDER (FND): A PILOT INVESTIGATION
This study is funded by the Medical Research Council and King’s College London. It is investigating factors that might increase the risk of developing FND, as well as potential triggers of FND symptoms in everyday life. Participants will initially be invited to talk to a member of the research team by phone or videoconferencing, to discuss their suitability for the study. We will then send a questionnaire pack by email or post, which can be completed at home. Eligible participants will be invited to come to King’s College London, where they will complete a range of tasks and activities, including measures of memory, attention, motor, bodily and cognitive responses, and aspects of awareness.
We will ask participants to then go about their daily lives as usual whilst wearing a Fitbit Charge 5 wristband for one week. Participants will also be asked to answer some questions every day using their own smartphone, including questions about FND symptoms, other physical symptoms, daily events, and subjective well-being. At the end of the study, we will speak to participants individually via phone or videoconferencing to check their well-being, answer questions, and seek feedback on experiences of the study.
We can offer two £50 Love2Shop vouchers as a thank you for completing the study – one at the end of the KCL (face-to-face) session, and one at the end of the Fitbit/smartphone follow-up. Participants will also be able to keep the Fitbit for their own personal use after the study ends.
The feedback and data we obtain from this study will help us to plan a larger-scale study that will build on these initial findings, expected to commence in 2023.
Participants can contact Dr. Susannah Pick (susannah.pick@kcl.ac.uk, 07881 230 244) or Dr. Andrew Owens (andrew.owens@kcl.ac.uk, 07881 036 874) for further information, including Participant Information Sheets, Consent forms, etc.
EXAMINING THE ROLE OF SHAME IN SEIZURE DISORDERS (INTERNATIONAL PARTICIPANTS)
Description: Shame can contribute to mental health difficulties. Previous studies suggest that people with seizure disorders are more likely to experience shame than people without seizures. In this study, we explore how people with seizures cope with shame and how shame may impact on their mental health and seizures. We are also interested to compare how experiences of shame may be similar or different in people with epileptic or functional seizures (also known as dissociative seizures, nonepileptic attack disorder, and psychogenic non-epileptic seizures). This study should help us to understand people with seizures better and to inform psychotherapeutic interventions for people living with seizures. This study is part of a Clinical Psychology Doctorate (ClinPsyD) project based at the University of Sheffield.
For more information and to participate: https://shef.qualtrics.com/
SELF-REPORTED PHYSICAL AND NON-PHYSICAL FEATURES OF FUNCTIONAL GAIT DISORDERS
We will investigate these motor and non-motor symptoms to explore their frequency and severity, as well as their associations with walking, participation in daily tasks, and quality of life. We will also examine if these symptoms change over the period of one year, and if they improve or worsen during that time. This research may help to inform treatment and improve outcomes for people living with functional gait disorders.
For further information, please click here: https://redcap.healthinformatics.unimelb.edu.au/surveys/?s=LMYLK3P83E
MEASURING CHANGE IN INDIVIDUALS WITH FUNCTIONAL NEUROLOGICAL SYMPTOM DISORDER (FOR INTERNATIONAL PARTICIPANTS)
What is the purpose of the study?
This is a study to help us to understand and measure treatment-related changes in functional neurological symptom disorder (FNSD) or Non-Epileptic Attack Disorder (NEAD). We will use questionnaires and measures of behaviour and thought patterns before and after psychotherapy to examine any changes in well-being in individuals with FNSD/NEAD.
This study is part of a PhD-project based at the University of Sheffield.
for further information, please click here: https://forms.gle/yMWyfqwEhsS9r71k9
THE ROLE OF SELF-COMPASSION AND EXPERIENTIAL AVOIDANCE IN FUNCTIONAL SEIZURES (OPEN TO INTERNATIONAL PARTICIPANTS)
The purpose of this study is to explore psychological factors which could affect outcomes in people who experience functional seizures. In particular, we are looking at self-compassion (whether people are kind to themselves) and experiential avoidance (e.g., trying to avoid difficult feelings) to see whether they are important for wellbeing in people with functional seizures. We hope that this will contribute to the research base and understanding of functional seizures and that this will influence the psychological support available for those who experience functional seizures.
For more information on the study please download the Participant Information Sheet here
HEALTH LITERACY
Are you living with a neurological condition? We are looking for people to share their views, needs, & dislikes about digital health tools for neuro. https://redcap.link/miikb66x
The survey is open to local, national and international participants that understand English.
RESEARCH STUDY: THE SOCIAL SHAPING OF FND EXPERIENCE (US ONLY)
Researchers from Northwestern University’s Department of Anthropology. The purpose of the study is to investigate the internal sensations and social experiences associated with FND.
Ways of participating include:
- Two in-depth interviews
- 4 questionnaires
- Observation and journaling
- A brief heart rate monitoring task
- Allowing us to interview another member of your household
- Both in-person and remote participation are possible
Participants will be compensated up to $80 for their time and effort in participating in the study activities. Household members who participate will also be compensated
If you are interested in participating, please click on the below link for additional information
AN INTERPRETIVE PHENOMENOLOGICAL ANALYSIS OF THE SYMPTOM MANAGEMENT EXPERIENCE OF INDIVIDUALS WITH NEAD
My name is Emily Norman and I am a Postgraduate student at Manchester Metropolitan University, studying Health Psychology. This research project aims to explore the genuine experiences of symptom management options experienced by those with NEAD, revealing what has been helpful or unhelpful, and allowing for the expression of future desires surrounding
management modalities. This research project is insured by the university and is organised by myself, alongside the advisory and supportive role of my supervisor.
Please read more here: https://drive.google.com/file/d/14fUkgQ9_IvGxN5YZndF6WYxSEElDxglk/view?usp=sharing
MEDICALLY NOT YET EXPLAINED SYMPTOMS (MNYES) PRIORITY SETTING PARTNERSHIP SURVEY
Brief Project Description
What is the survey for?
Last year we ran a survey asking people which questions about MNYES that they would like to see answered by research. We invited people living with MNYES, carers and health care professionals for their views. Thank you to everyone who sent in comments and questions. We’ve taken all the responses into account and summarised them into 46 representative questions. We now need your help to decide the most important questions to take forward.
Do you experience persistent pain, fatigue, dizziness/fainting, heart palpitations, stomach/bowel problems, problems with movement (tremors, shakes, weakness), unexplained blackouts, seizures/sudden loss of awareness? We are looking for people with experience of these symptoms, their carers and healthcare professionals to complete our survey. Tell us your priorities for future research: Research Priorities for Medically Not Yet Explained Symptoms_Interim Survey
CAREGIVERS’ EXPERIENCES IN ACCESSING MENTAL HEALTH TREATMENT FOR THEIR CHILDREN
Brief Project Description
Our names are Kim Hager, LICSW, and Maria Martinez Calderon, LMHC. We both work as outpatient therapists at Children’s Friend, Inc., an affiliate of Seven Hills Foundation. We work with families with children with mental health conditions, medical conditions, and rare diseases. The purpose of this research is to explore the experiences in and barriers to accessing mental health services for parents who are caring for children with mental health conditions, medical conditions, and/or rare disease. In this study, we are defining a barrier as any factor or obstacle that prevents access to mental health services that a child needs. A mental health condition is defined as a disorder that affects one’s mood, thinking, and behavior. A medical condition is defined as a common physical disease that negatively impacts different organs in one’s body and it is not classified as a rare disease. A rare disease is defined as a medical condition that affects fewer than 200,000 people in the United States. By completing this survey, you will add to our understanding of what prevents families from accessing the mental health care their children need.
Please complete the survey here: https://www.surveymonkey.com/r/PQFSMVV
The survey is also translated in spanish here: https://es.surveymonkey.com/r/2DXD5TX
No Longer RECRUITING
IMPROVING THERAPY TREATMENTS FOR FUNCTIONAL NEUROLOGICAL DISORDERS THROUGH COLLABORATIVE NEUROSCIENCE RESEARCH
WHAT IS THE AIM OF THIS DISCUSSION-GROUP PROJECT?
We aim to understand patient and health-professional engagement and dis-engagement with therapy treatments, including therapies for FND. At University College London (UCL), we use advanced research methods including brain scanning for research, but we need the help of experts by experience to make this work really relevant to those who need it. In this project, experts-by-experience will discuss how to make research more relevant. Then, the lessons from this discussion-group project will be publicised and also strengthen applications for funding, which we need to make to actually carry out laboratory research.
For more information and to be part of this group, please review the Patient Information Sheet here
USING A ‘DIGITAL DOCTOR’ FOR DIAGNOSIS
This study will find out whether it is possible to use a ‘digital doctor’ to diagnose why a person has experienced transient loss of consciousness (TLOC). The three common reasons for TLOC are epileptic seizures, faints and dissociative seizures. This is important because people with these conditions require different tests and treatments.
The ‘digital doctor’ is a talking head presented on a computer screen that asks questions about what happened, just like a human doctor would. The ‘digital doctor’ will also ask anyone who saw you lose consciousness some questions. All answers will be recorded by the computer and analysed automatically. The research team intend to ‘train’ the ‘digital doctor’ to use the answers of people who have experienced TLOC to decide the most likely cause.
At this stage the ‘digital doctor’ will not be used to provide a diagnosis for you, and you will not be informed of any predictions that the ‘digital doctor’ makes based on your responses. The ‘digital doctor’ will not influence any investigations or treatments that you are currently having nor will have in the future in any way.
For more information please review the project summary: Project summary – https://theipep.shef.ac.uk/projectSummary
Additional information is below
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- Participant information sheet (patient) – https://theipep.shef.ac.uk/patientInformationExternal
- Participant information sheet (witness) – https://theipep.shef.ac.uk/witnessInformationExternal
- Consent-to-contact form – https://theipep.shef.ac.uk/interest
PARTICIPANTS NEEDED FOR AN ONLINE RESEARCH STUDY (UK PARTICIPANTS ONLY)
Investigating self-perception of emotion in individuals with functional seizures (FS): using self-report measures and an emotional Stroop task.
We need two groups of people:
1. people with functional seizures, and
2. people without seizures of any type.
The research is investigating how people with and without functional seizures detect and process emotion.
You will be required to fill out six questionnaires and take part in a short experimental task. This usually takes up to an hour to do.
Everything will take place online and you can choose to receive a £10 voucher once you submit your answers.
GROUP 1If you experience functional seizures and want to take part, you should also:
You cannot take part if you have a diagnosis of epilepsy, dementia, or other neurological disorder. If you meet the criteria above, you can take part by clicking on the link here: https://research.sc/participant/login/dynamic/74B7E7FD-A3D4-43BE-9BB6-008A217FD8A6 | GROUP 2If you do not experience functional seizures and want to take part, you should also:
You cannot take part if you have a diagnosis of epilepsy, dementia, or other neurological disorder. If you meet the criteria above, you can take part by clicking on the link here: https://research.sc/participant/login/dynamic/D0AC781F-C271-4883-AF4D-CA41754B4CA0 |
If you have any questions about the research or would like some more information, please email Shaista Meer at um08sm@leeds.ac.uk.
*This study has been reviewed and given favourable opinion by the School of Psychology Research Ethics Committee (SOPREC), Ref: PSYC-332, Date 20/10/2021.
ILLNESS IDENTITY IN FUNCTIONAL NEUROLOGICAL DISORDER (INTERNATIONAL PARTICIPANTS)
This study aims to help psychologists better understand the experiences of individuals who have functional symptoms and what these experiences may mean for their sense of identity and how they may see themselves as a person who lives with these symptoms. Participation involves completing an online questionnaire about the impact of your experiences on how you see yourself as person living with these symptoms. The answers you provide will be anonymous. Participating should take less than 10 minutes. It is hoped this study will help inform future pathways of care.
If you think you might be interested in participating or would like to know more, you can click on the link below
https://unioflimerick.eu.qualtrics.com/jfe/form/SV_ahCJNcLYEfOqQZg
This research study has received Ethics approval from the Education and Health Sciences Research Ethics Committee [2021_11_01_EHS]. If you have any concerns about this study and wish to contact someone independent you may contact the Chair, Education and Health Sciences Research Ethics Committee, EHS Faculty Office, University of LimerickEmail : ehsresearchethics@ul.ie
WHAT CAUSES LATER-ONSET FUNCTIONAL SEIZURES AND WHAT KEEPS THEM GOING? STUDY REGISTRATION
What is the purpose of the study?
The purpose of the study is to understand more about what causes later-onset (which we are defining as over 40 years of age) Functional Seizures, what helps them get better and what makes them worse. We want to seek the views of people living with later-onset Functional Seizures.
For further information and to take part click here:https://edinburgh.onlinesurveys.ac.uk/what-causes-later-onset-functional-seizures-and-what-keeps
RESEARCH STUDY: AN EXPLORATION OF THE NUTRITION ADVICE PROVIDED TO NON-ATHLETIC FULL-TIME WHEELCHAIR USERS (FTWU) IN THEIR PROGRESSION TO WHEELCHAIR USE.
Description: This study aims to discover the nutritional advice non – athletic full-time wheelchair users (FTWU) received on progression to wheelchair use and how they utilise that advice or
information and their perceptions of energy changes. For 18 years and over.
If you would like further information and to participate, please follow this link: https://ucw.onlinesurveys.ac.uk/the-nutrition-advice–full-time-wheelchair
SCREENING FOR PSYCHOTIC EXPERIENCES IN PEOPLE WITH FUNCTIONAL NEUROLOGICAL DISORDERS
The following validated questionnaire is a preliminary screening of psychotic experiences in adults. Completion will take you approximately 15 minutes. There are not good or bad responses, and all data will be managed anonymously. We want to thank you in advance for the time taken in answering the questions. This will help us design further studies to increase our understanding of FND.
Please complete the survey here https://forms.office.com/pages/responsepage.aspx?id=a7xs9vfNYUK9c0PbO57iqhF9iXKGTxVDvbUwZvGO24NUM0dXUThCT01XUE9JNUdaUlc4RVFDNUM2Wi4u
SCREENING OF AUTISTIC TRAITS IN PEOPLE WITH FUNCTIONAL NEUROLOGICAL DISORDERS
The following validated questionnaire is a preliminary screening of autistic traits in adults. Completion will take you approximately 20 minutes. There are no good or bad responses, and all the data will be managed anonymously. We want to thank you in advance for the time taken in answering the questions. This will help us design further studies to increase our understanding of FND.
Please complete the survey here: https://forms.office.com/pages/responsepage.aspx?id=a7xs9vfNYUK9c0PbO57iqhF9iXKGTxVDvbUwZvGO24NUMTA2M1JTUUFBU0czNDhHWEtMVkZESVdBSy4u
LIVING WITH COMPLEX, POORLY-UNDERSTOOD MEDICAL CONDITIONS: EXPERIENCES OF STIGMA AND SHAME.
Brief Project Description
My name is Katharine Cheston, and I am a PhD researcher at the Institute for Medical Humanities, Durham University. I am studying how shame and stigma impact upon women’s experiences of complex, poorly understood medical conditions: those conditions that can cause severe and disabling symptoms but for which there is currently no accepted medical explanation. This study has received ethical approval from the Durham University Department of Anthropology Ethics Committee.
If you would like to express an interest in participating in this study, please complete this online survey: https://durham.onlinesurveys.ac.uk/living-with-complex-poorly-understood-medical-conditions. More information about this project can be found here: https://katharinecheston.com/current-project/.
PRELIMINARY DEVELOPMENT OF A PSYCHOLOGICAL FORMULATION TOOL FOR PEOPLE WITH FUNCTIONAL NEUROLOGICAL DISORDER
Brief Project Description
We know that people with FND are different to one another and some people with FND find it helpful to see a psychologist. We want to ensure that, if people with FND choose to see a psychologist or other therapist, their problems are understood in an individual way. We are conducting a research study to design a tool that will help therapists do this. We have some ideas about what the tool needs to include but would like to hear what people with FND think about this. This will involve meeting with members of the research team on Zoom and discussing it in a group of other people with FND.
For more information:
https://personalpages.manchester.ac.uk/postgrad/kathryn.harper/PIS%20EBE%20Focus%20Groups%20V2%2031.03.2021.pdf
If you are interested in being part of this study, please Email to express interest: kathryn.harper@postgrad.manchester.ac.uk
MEASURING THE FAMILY IMPACT OF A PERSON’S HEALTH CONDITION (UK ONLY)
Rubina Shag is PhD researcher from Cardiff University. Rubina is looking to recruit people with Functional Neurological Disorder (FND) and their partner/family members in my study to understand the family impact of the person’s FND.
If you interested in participating, please click on the below link https://cardiff.onlinesurveys.ac.uk/measuring-the-family-impact-of-disease-
FND AND OTHER PHYSICAL CONDITIONS; WHICH NEW ONES DEVELOP?
Brief Project Description
I am a consultant neurologist at the St George’s FND service, London UK. We are interested in physical conditions people develop after FND diagnosis. These require recognition and people can benefit from treatment. Quite a bit is known about physical triggers to FND but little about other physical conditions that develop later (like they can in anyone). Little is known what happens to medication either. In our experience changes in movement for example can lead to musculoskeletal problems like tendinitis/bursitis/carpal tunnel syndrome and sleep problems that are present/can develop can be caused by sleep apnoea, restless legs and other sleep disorders. Other neurological conditions often change as well (e.g. migraine) and benefit from treatment. We would be interested in your views and estimate it would could take 10-15 minutes.
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.
BRIEF ANNOUNCEMENT ABOUT ASU STUDY OF FUNCTIONAL SEIZURES:
The Arizona State University (ASU) Emotion, Culture, and Psychophysiology Lab is inviting individuals who experience functional (nonepileptic) seizures to take part in an online survey study. Participation involves filling out an online questionnaire that takes about 1-2 hours to complete. Information is kept completely confidential. The first 50 participants will be able to receive a $35 gift card for filling out the survey; participants after the first 50 will be entered into a drawing for one of four $35 giftcards. The link is: https://www.surveymonkey.com/r/SeizureStudy
For those married or in a partner relationship for 6 months or more, we also invite their partner to participate, for a separate $25 giftcard for the first 50 partners; partners after the first 50 can be entered into a drawing for one of four $25 giftcards. The link to the partner version is: https://www.surveymonkey.com/r/SeizureStudyUSUKPartners If you have questions or for more information, please contact us at asuseizurestudy@gmail.com or +1 (602) 543-4524.
SURVEY OF FND PATIENTS (ALL COUNTRIES)
Patients with FND report facing prejudice and stigma from health professionals as well as from the general public. One of the potential reasons for this is the range of different terms used by clinicians to describe FND. This lack of consistency also makes it hard for patients to access appropriate services. There is no published research to understand patient views on the terms used to describe FND. This survey seeks to ask patients about their experience and views on different terms used. The results will help inform clinicians and lead to improved patient experience and access to treatment.
Please click on the link here to participate: https://docs.google.com/forms/d/e/1FAIpQLScHVKw6-KqWmOpv31eXXHU75lxYAoGytQgqD_D3AmhLpJ-ECQ/viewform?usp=pp_url
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.
Kerry Micklewright is an occupational therapist and researcher and is at the early stages of designing a research project. Kerry’s interest is how support could be improved for people living with Functional Neurological Disorder (FND). Kerry is looking for four people to form a Patient and Public Involvement (PPI) group to give their thoughts so that the project addresses areas important to those living with FND.
Who can get involved?
- People diagnosed with FND (living with any type of symptoms)
- People who support someone diagnosed with FND in an unpaid role – these people are sometimes called ‘carers’ (though we know not everyone uses this word) and are usually family or friends
To get involved, please review the attached request
https://docs.google.com/document/d/1ctizDYaL9aVL7VvuwsmdLuBTXjuzF5vSZ7RLGmR0qaU/edit?usp=sharing
COVID AND FND SURVEY
FND Hope and its affiliates (FND Hope UK, FND Hope USA, FND Hope Canada and FND Hope Australia), is running this survey to assess the impact of the COVID-19 crisis on those who have been diagnosed with Functional Neurological Disorder (FND).
We are going to use the results to inform our ongoing organisational response to the pandemic. It is anonymous and should only take a few minutes to complete.
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