This page highlights current research projects in the area of functional neurological disorder (FND). If you want to find out more about any of the studies please follow the links below. If you are researcher and want your project added to the website please complete the Research Project Submission Form.
FND_LIMA.COM (Functional Neurological Disorders in Lima and effect of Complementary Medicine)
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Lucia Tesolin, MD (FNDS Member) |
This study, conducted in cooperation with Essalud (Seguro Social de Salud) National Health System aims to analyse the frequency and the socio-demographic characteristics of patients with FND in Latino America: in particular it will be conducted, during 18 months, in the Neurology Department of Rebagliati Hospital, in Lima-Peru', which serves a population of 12 million inhabitants, from different economic and cultural backgrounds. Previously published studies on the prevalence/incidence of FND, have been conducted mainly in westernised countries, regarding Latin America, there are just a couple of studies concerning mainly pseudo-epileptic seizures.
This project can add awareness about the frequency of these symptoms in Latino-American's countries, such as Peru, that have a different culture, economic income and lifestyle.The literature reports that FNDs represent important costs for health systems and that if they are not adequately handled with specific treatment, they tend to become chronic.
In this respect, this project also aims to evaluate the effect of treatment with complementary medicine techniques (such as yoga, reflexotherapy, acupuncture) compared to the effect of correct communication of the diagnosis alone. Some complementary medicine techniques have already been introduced into the treatment protocols of some FND-rehabilitation centres. The present study proposes the use of these techniques, which can be offered free of charge in Peru, to patients registered in the health system (Seguro Social), and which are often proposed as group sessions, thus representing a limited investment of resources and personnel. If the results show their effectiveness, their use could be extended elsewhere.
Project Start Date: February 19, 2024
Project End Date: February 18, 2026
FND Research Connect
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David Palmer (FNDS Member) |
FND Research Connect is a database which registers people to be sent invitations for new studies as they begin, as well as allowing them to help with research by anonymously updating us about how their symptoms change over time. After our initial launch in Australia, we have over 300 members, and are now ready to launch worldwide. Both people with FND who have symptoms at the moment and people who are in remission from FND can sign up at www.fnd-research.org. Interested friends and relatives (and healthcare providers) can also sign up there as controls for research, which for some studies are just as important as people with FND. Signing up online takes about five minutes, and people will be asked to do a 1-2 minute update questionnaire every four months after that.
Project Start Date: March 13, 2024
Project End Date: March 13, 2027
Diagnosis Communication of Functional Seizures to Adolescents and Parents/Caregivers
In this project, we will be conducting individual qualitative semi-structured interviews with adolescents and young adults (ages 12-21) diagnosed with functional seizures as well as their parents/caregivers about their experiences and best practice recommendations for how pediatric neurologists should communicate a new diagnosis of functional seizures to patients and families. Optimizing diagnosis communication of functional seizures to patients and families may increase understanding and therapeutic benefit of the diagnosis, as well as increase uptake of recommended therapies. Findings will inform a future intervention to improve diagnosis communication of functional seizures among pediatric neurologists.
Project Start Date: March 1, 2023
Project End Date: March 1, 2024
Therapeutic Interventions for Adolescents with Non-Epileptic Seizures
For this project the researchers are interested in learning more about what emerging adults’ experiences were with non-epileptic seizures during adolescence, and what their experience was like in therapy when seeking treatment for their non-epileptic seizures. If you are between the ages of 18 to 24, have attended between 1 to 20 therapy sessions between the ages of 15 to 17, are an English-speaker, and have access to Zoom, I would appreciate the opportunity to interview you about your experiences. Participation includes a video-conferencing interview via Zoom lasting approximately one hour.
The benefits of this study are to expand the understanding of how certain therapeutic interventions can be helpful for adolescents who have non-epileptic seizures and have attended therapy. Additionally, this will help parents understand what treatments they should be seeking, and this will aid therapists and medical staff by informing them what some of the therapeutic interventions they may consider using in therapy to help with symptom reduction.
Additionally, participants will get to choose to receive a $20 gift card to either Starbucks or Amazon. This gift card will be emailed to the participant at the end of the interview.
If you would like to participate in the study or if you have any questions please contact me at ntrantel@antioch.edu.
Project Start Date: May 1, 2023
Project End Date: May 1, 2024
The relationship between early adverse experiences, self-compassion, self-stigma, and health related quality of life in individuals with a diagnosis of functional neurological disorder.
The purpose of this study is to better understand the relationship between early adverse experiences, levels of self-compassion, and internalised self-stigma for people diagnosed with functional neurological disorder (FND). The study will look at how these psychological factors affect a person's current quality of life, in order to think about ways to improve services and support available. This research aims to increase awareness amongst health professionals about the contributing factors in FND, which will allow for the future development of new care models and improvements to services.
Participants need to be over the age of 18 years old, resident in the UK, and have a diagnosis of FND. Participation should take approx. 20mins and this involves filling in a questionnaire online.
You can find out more information via the Twitter page @livingwithFND23 or participate in the study here: https://edinburgh.eu.qualtrics.com/jfe/form/SV_blTpzkDQDlqqacS
Project Start Date: May 1, 2023
Project End Date: March 1, 2024
Factors Influencing the Impact of Stigma on Distress and Quality of Life for Individuals who Experience Functional Seizures
This short study aims to investigate the relationships between stigma and quality of life and distress for people experiencing Functional Seizures (often also called non-epileptic seizures (NES), psychogenic non-epileptic seizures (PNES), non-epileptic attack disorder (NEAD), and dissociative seizures), and to explore the psychological factors that may impact these relationships. We hope that our findings will add to the
evidence base and understanding of functional seizures, and that in future it could serve to inform treatment options to support people experiencing functional seizures.
Participation is open to anyone over the age of 18 years old, who has a diagnosis of Functional Seizures and does not also have a diagnosis of epilepsy, or experience seizures due to another health condition. Participation should take 15-20 minutes and involves filling in a number of questionnaires online.
You can find more information and updates on our wiki page www.wiki.ed.ac.uk/display/FSSS/ or on Twitter @FSStigmaStudy
Project Start Date: May 5, 2023
Project End Date: April 5, 2024
Retraining and Control Therapy (ReACT): Sense of Control and Symptom Expectations as Targets of a Treatment for PNES
Aaron D. Fobian, PhD (FNDS Member)
The purpose of this study is to assess sense of control and catastrophic symptom expectations as targets for Retraining and Control Therapy (ReACT- an intervention focused on changing behaviors and thoughts) for treatment of pediatric psychogenic non-epileptic seizures (PNES, episodes resembling epileptic seizures but not correlated with epileptiform discharges). 11-18-year-olds diagnosed with PNES will engage in twelve sessions of ReACT or another therapy commonly used to treat PNES. Sense of control over actions will be measured by the magic and turbulence task, a well-validated measure of sense of control. Participants will complete the cold pressor test (CPT) in which participants hold their hand in cool water for as long as possible up to 3 minutes. Catastrophic symptom expectations in response to the CPT will be measured by Pain Catastrophizing Scale for Children (PCS-C) pain tolerance (time with hand in water) and cortisol response. Target assessments will occur 7 days before treatment, 7 days after 12th treatment session, 6 months and 12 months after the 12th treatment session. PNES frequency will be measured from 30 days before to 12 months after treatment.
Project Start Date: October 1, 2021
Project End Date: June 30, 2026