FND Provider Experiences

Drs. Amy Wery and Johanna Messerly, Assistant Professors at the University of Texas Health and Science Center, will be conducting a research study on FND provider experiences. The primary aim of the study is to identify current assessment and intervention practices among FND providers to identify common practices. Increasing understanding of current mental health treatment practices will assist in unifying the field and honing future standard of practice to further optimize treatment.

Willing participants will be asked to complete a 10-minute online survey that will be accessed through a link in a recruitment email. We are recruiting licensed providers who treat and/or assess patients with FND. There will be no compensation for participating in this study. To protect your confidentiality, survey responses are anonymous, and no personally identifiable information will be asked. If you have any questions or would like to participate, please reach out to Amy Werry at werrymcfarli@uthscsa.edu.

Project Start Date: 31 October 2024

Project End Date: 31 March 2025

Emotional Experiences, Schemas and Self Care: Living with Functional Seizures

This study will explore the links between and roles of emotional maltreatment, individual schemas and the influence this may have on a persons wellbeing and experience with functional seizures (FS). It will look at the frequency of someone's seizures as well as considering wider psychological outcomes (depression, anxiety & stress; wellbeing; and self care behaviours) of these factors.

Emotional maltreatment has been historically difficult to define however, it could be understood in 2 broad parts: ‘Acts of commission’ (ie. rejecting, taunting, shaming or belittling); and ‘acts of omission’ (ie. ignoring, failing to meet emotional needs, being detached/avoidant or inconsistent parenting).

Although some have attempted to understand the cause of FS through a person's experience of and response to trauma, there has been a predominant lack of focus on the impact of 'small t' traumas and emotional maltreatment. Schemas are cognitive frameworks that determine how we process and interpret the world around us. This research aims to explore whether the experience of emotional maltreatment leads to the development of maladaptive schemas and if this in turn impacts a person's experience of functional seizures but also their psychological health and ability to care for themselves.

This study will recruit individuals who identify as experiencing functional seizures. Participants will complete a series of online questionnaires about their experiences with emotional maltreatment, their schemas, mental health, wellbeing, self care behaviour and seizure frequency. The data collected will be anonymous.

Project Start Date: 15 November 2022

Project End Date: 14 March 2025

Experiences of Childhood, Thinking Patterns and Emotional Distress in Functional Neurological Disorders

This study aims to explore the experiences of people with Functional Neurological Disorder (FND) and/or functional seizures (NEAD) to gain a better understanding of the role of psychological factors in symptom presentation. The intention is to publish the results in a peer-reviewed journal, with potential use for teaching or training purposes. It is hoped that this information could help to improve clinical care for people affected in the future.

The study involves completing a single online survey which includes 4 questionnaires and some background questions about age, gender, ethnicity, country of residency and symptoms related to FND. The questionnaires will also ask about mental health, childhood experiences and daily functioning.

It should take a total time of between 30 minutes and one hour to complete all the questionnaires. They will cover topics including experiences of depression, anxiety, and stress, emotional and thinking patterns, stressful early life experiences and quality of life. The data collected will be anonymous.

If you would like to take part in this study, please follow this link:

https://staffordshire.qualtrics.com/jfe/form/SV_7VDhGBJQHurcWy2

Project Start Date: 31 May 2024

Project End Date: 30 April 2025

Mega-Analysis of Structural Connectivity in Functional Neurological Disorder

We are currently conducting a mega-analysis focused on diffusion-weighted imaging (DWI) data in FND. Our goal is to integrate and analyze data across studies to enhance our understanding of FND.

We would greatly appreciate your participation in this initiative by sharing DWI-datasets of FND patients and controls that you have collected, whether from published studies or ongoing research. Researchers who contribute data to the project will become co-authors on all project-associated publications.

The project is conducted in close collaboration with the Neuroimaging Committee of the FND Society with oversight from Prof. Selma Aybek and Assc. Prof. David Perez. We are committed to maintaining the highest standards of data privacy and ethical integrity. Details on how we transfer and handle the data will be shared with you before you agree to share your data.

Please leave fill out the Google form here you are interested in joining this mega-analysis!

If you have any questions, please email Lenny Marapin at petr.sojka@lf1.cuni.cz

Psychoeducational tools used by doctors after diagnosis of Functional Neurological Disorder

Dr Kate Johnson is a neurologist in Adelaide, South Australia. She is a student in the degree Masters of Neurology (distance learning) via UCL and is conducting a project on psychoeducation in FND, comprising a systematic review of the literature and "snowball sampling" to find the resources that may not be formally published, which doctors and health care workers are using on a daily basis with their patients. She is hoping to develop a tool for Neurologists to use with their patients, for which she will seek feedback from doctors and patients. This project is supervised by Dr Caroline Selai (https://www.ucl.ac.uk/ion/study/education-team-contacts/dr-caroline-selai) and Dr Michael Moutoussis (https://profiles.ucl.ac.uk/36080-michael-moutoussis) and will be due for completion August 2024.

Dr Johnson is sharing this form in the hope that people will share the resources they use. All sources will be formally referenced in  the project and any publications that result. The details requested in the form are for referencing purposes so she has left these optional. If you have any resources you can share please email to kate.johnson.20@ucl.ac.uk or use the google form link here.

Project Start Date: 5 February 2024

Project End Date: 1 August 2024

Tremor Retrainer Software Application for Functional Tremor:  Pilot Study

The UVA Health System Department of Neurology seeks children and adults ages 10 and older with a diagnosis of functional tremor for a research study.

The purpose of the research study is to evaluate ease of use for a smartphone-based intervention called “Tremor Retrainer” is for patients with functional tremor.  The study involves a one week of at-home smartphone-based intervention and 4 visits to UVA lasting 60-90 minutes each. These will occur weekly for 3 weeks and then once again 3 months later.

Study-related exams and intervention provided free of change.

No compensation is provided for this study. Patients will be reimbursed for travel expenses up to $50 per study visit.

For more information please contact:
Hannah Caballero, Clinical Research Coordinator
434-297-5711, HTP5AW@uvahealth.org
IRB-HSR # 230161

Project Start Date: April 25, 2024

Project End Date: April 25, 2025

FND_LIMA.COM (Functional Neurological Disorders in Lima and effect of Complementary Medicine)

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

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

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