FND Hope is interested in advancing accelerate research into the clinic care, cause, diagnosis, treatment and recovery from FND. FND Hope does this through collaboration with researchers on their research projects and through our Scientific Registry for FND.
Research Priorities
FND Hope has surveyed FND patients to identify areas that are priorities for advancing research. These include the following:
Submitting a research proposal
Please read further to learn more about our research resources, policies, procedures, and more. Please be advised, the review process can take anywhere from 3-6 weeks depending on the project and materials submitted.
The Scientific Registry currently hosts a baseline survey that was developed in collaboration with leading FND researchers. It was broken into three parts for ease of completion by patients.
It uses a mix of standardized instruments used across conditions, as well as questions customized to the FND experience. The surveys includes the following sections:
To see the full survey, click here.
If you are recruiting subjects for an existing study, we are able to notify the entire FND Scientific Registry participant community or selected participants. We are also able to provide notice to the FND Hope constituency through email, website posting and social media.
If you are recruiting subjects for an existing study, we are able to notify the entire FND Scientific Registry participant community or selected participants. We are also able to provide notice to the FND Hope constituency through email, website posting and social media.
Please email us a copy of your protocol, ethics board appoval documents, and any other relavent materials to research@fndhope.org
FND Scientific Registry Research Proposal Form
FND Scientific Registry Data Access Guidelines
FND Scientific Registry Data Access Agreement
FND Scientific Registry Questions
FND Hope works closely with investigators and FND Scientific Registry participants to assure that approved studies will benefit people with FND.
To submit a proposal for consideration of any of the types of partnerships listed above:
FND Hope is prioritizing collaboration on research that fits within these areas. At this time and due to an influx of research requests, FND Hope does not review unpublished work or student thesis papers.
Review the FND Scientific Registry Data Access Guidelines and Data Access Agreement.
Submit your proposal using the FND Scientific Registry Research Proposal Form to research@fndhope.org.
Advisory Committee will review your proposal. Proposals not approved may be re-submited at any time.
A data set or direct access to de-identified FND Scientific Registry data will be provided as determined by the Advisory Committee.
FND Hope has a policy of providing its research resources on an open-access basis, meaning that we will work with any investigator, at any institution, anywhere in the world who is conducting valid research that is in alignment with our mission and policies.
We also have a policy supporting data sharing among investigators. Researchers who use the FND Scientific Registry resources in their studies are obligated to share the data and/or findings generated using these resources with FND Hope for further use, including sharing with the broader scientific community.
*Please note: Patient data is stored and protected through the Genetic Alliance data base.
Pricing for studies using FND Scientific Registry data, samples, and other FND Hope resources is determined on a case-by-case basis by the FND Scientific Registry Advisory Committee. Please contact research@fndhope.org for more information.
The FND Hope Research Advisory Committee is responsible for providing oversight and advice for FND Hope’s research-related activities, including:
Current members include:
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