FND Research
Engagement in research has been at the heart of FND Hope’s mission, and supporting high-quality, ethical research is not just important—it’s crucial to transforming the lives of people with FND.
We believe research should:
- Advance science-based quality FND research.
- Adhere to strong ethical standards.
- Reflect real-world experiences and priorities of people with FND.
- Amplify the patient voice, which is essential and transformative.
- Reflect the authentic FND perspective.
- Challenge bias and reduce stigma.
- Foster more relevant and respectful research.
The FND Hope Research Collective is committed to managing and implementing our research priorities. We have collaborated on over 170 research projects, with many resulting in published articles, some of which include FND Hope representatives as contributing authors. The chart on the right shows those collaborations. This extensive engagement demonstrates our commitment to ensuring the patient voice is included in FND research.
Promoting Respectful Terminology and Language
Too often, outdated or stigmatizing terminology continues to appear in research. At FND Hope, we work directly with researchers to ensure that language reflects current clinical understanding and avoids reinforcing harmful stereotypes. Using accurate, person-centered language is not just about word choice—it’s about upholding dignity and maintaining scientific integrity.
Avoiding Redundancy—Encouraging Collaboration
We routinely review proposals that replicate already well-established research. Instead of approving repetitive studies, we encourage researchers to build upon existing knowledge in ways that add meaningful value to the field. When we receive similar or overlapping proposals, we actively promote collaboration. This approach helps conserve resources, reduce participant burden, and accelerate progress for the FND community.
Hosting the FND Patient Registry
To support meaningful research, we are putting the final touches on a second-generation FND patient registry—a secure, voluntary database that captures key clinical and quality-of-life information from individuals with FND. This registry helps standardize the data most often requested by researchers and streamlines ethical access to de-identified information. It empowers patients to contribute to research on their terms and helps ensure studies are built on strong, inclusive foundations. The first registry had over 500 participants and we hope to enroll over 1000 in this new iteration.
