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Researcher Information

Researcher Information

Let's Advance FND Research Together!

 

FND Hope has teamed up with the Genetic Alliance to create the world’s first Scientific Registry for Functional Neurological Disorder (FND). The purpose of the Scientific Registry is to accelerate research into the clinic care, causes, diagnosis, treatment and recovery of FND. Bringing patients and their health information together in a centralized platform allows researchers to find participants to match their protocol, enhancing the confidence and 

How To Partner with the FND Scientific Registry

Please read further to learn more about our research resources, policies, procedures, and more. 

The review process can take anywhere from 3-6 weeks depending on the project and materials submitted.

Partner with the Registry in several ways:

Submitting a Research Proposal

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:

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.

Open Access and Data-Sharing

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

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 Hope Research Advisory Committee. Please contact research@fndhope.org for more information.

FND Hope Research Advisory Committee

The FND Hope Research Advisory Committee is responsible for providing oversight and advice for FND Scientific Registry-related activities and other research collaborations, including:

  • Informing researchers about the FND Scientific Registry and encouraging them to develop studies using FND Scientific Registry resources.
  • Facilitating engagement between researchers and FND Scientific Registry members.
  • Informing network members about the research process and soliciting their input on FND Scientific Registry research activities, including individual studies.
  • Facilitating the development of new research studies based on topics of importance to the FND Scientific Registry community.
  • Publishing and disseminating results from FND Scientific Registry supported studies.
  • Providing review and approval of all research studies to be conducted through FND Scientific Registry.

Current members include:

  • Bridget Mildon, FND Hope International
  • Elizabeth Smith, FND Hope USA
  • Amy Bradley,  FND Hope UK
  • Dawn Golder, FND Hope UK

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

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