FND RESEARCH

TOGETHER WE WILL SEARCH FOR BETTER TREATMENTS THROUGH SCIENTIFIC RESEARCH

We invite you to contact us at research@fndhope.org at any time for more information.

RESEARCH COLLABORATION

FND Hope is interested in advancing accelerated research into the clinical care, cause, diagnosis, treatment and recovery from FND. We collaborate with researchers and their research projects from all over the world. Keep reading to learn more about our research resources, policies, procedures, and more.

Ideal for Researchers or Advocacy groups seeking to recruit for their research studies.

If you are recruiting subjects for an existing study, we can notify the entire FND research participant community or selected participants. We are also able to provide notice to the FND Hope constituency through email, website posting and social media.

We provide comprehensive support, including:

Essential feedback
Letters of support
Participant recruitment
Integration of patient perspectives

Regardless of the project’s nature, our Research Committee adheres to a consistent set of guidelines to ensure that every endeavor is ethical, impactful, and community-centered. These guidelines, along with our collaborative process, help you integrate the patient voice into your research design and achieve truly transformative results.

FND Hope is prioritizing collaboration on research that fits within the priority areas identified. At this time and due to an influx of research requests, FND Hope does not review studies that are not intended for publication including student thesis papers.

Research Priorities

FND Hope surveyed FND patients and identified the following FND research priorities:

Treatments for FND, including
- Efficacy of such treatments,
- Tailoring of treatments to patient symptoms
- Post-treatment (long-term) efficacy
- Relapsing/remitting nature for some patients/symptoms
Outcome Measures for FND Treatment
Neuroimaging
Biomarkers
Pharmaceutical treatments
All risk factors
Genetics/epigenetics

Research Proposal Form

SUBMITTING A RESEARCH PROPOSAL

Let us assist with your FND research today!

FND Hope works closely with investigators and individuals diagnosed with FND to ensure that approved studies will benefit people with FND.

Submit your proposal using the Research Proposal Form. Please email your additional relevant documents to research@fndhope.org Include the name of your study in the subject line. Relevant documents include protocol, ethics board approval, and advertising materials.

The Advisory Committee will review your proposal. Please allow approximately 3-7 weeks.

Proposals may be returned with suggested changes. If the Researcher chooses to accept the suggested changes then proposal may be re-submitted.

Once approved, you will be asked to complete the FND Hope Announcement Information form. Please note the form must be filled out completely to avoid delays. Please allow approximately 2 weeks.

Researcher Tips

Ethical Review

Researchers are responsible for obtaining their own Institutional Review Board (IRB), Research Ethics Committee (REC) approval(s), or other relevant approvals required by their institutions or local governmental regulations. Proof of the relevant approvals will be required before we share the requested data.

What we need from you

Please email us a copy of your protocol, ethics board approval documents, and any other relevant materials to research@fndhope.org

Review Time Frame

Please be advised, the review process can take anywhere from 3-6 weeks depending on the project and materials submitted.

Pricing

We accept donations for our research services. Please use the FND Hope International Donate button.

Terminology

Acceptable terminology includes: Functional Neurological Disorder, Functional Movement Disorder, Functional Seizures, and Non-Epileptic Seizure.

Not acceptable terminology includes: Conversion Disorder, Psychogenic Movement Disorder, Pseudo Seizure, Dissociative Seizure, Psychogenic Seizures, and Psychosomatic.

Some terms will not be accepted and the paper declined. The researcher may also be asked to make appropriate changes.

FND HOPE RESEARCH COLLABORATIVE

FND HOPE RESEARCH COLLABORATIVE

The FND Hope Research Collaborative is responsible for providing oversight and advice for FND Hope’s research-related activities, including:

Informing researchers about FND terminology and encouraging them to develop studies using appropriate and consistent FND terminology.
Facilitating engagement between researchers and FND research participants.
Informing patients about FND Hope’s research collaborations and, where relevant, soliciting their input on priority research activities.
Facilitating the development of new research studies based on topics of importance to the FND patient community.
Publishing and disseminating results from collaborative research projects.
Providing review and approval of all research studies to be conducted in collaboration with FND Hope.

Current review panel members include:

Bridget Mildon, FND Hope International
Elizabeth Smith, FND Hope International
Teja Zeribi, FND Hope International