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.
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.
No Longer RECRUITING
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 firstname.lastname@example.org 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
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.
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.
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