Resources for Families
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NFXF Research
The best information and resources to help you learn more about research into all Fragile X-associated disorders.
The NFXF pursues our mission — to serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved — through our four strategic priorities: promoting advocacy, providing education, advancing research, and improving treatment.
Facilitating Research
Our research facilitation efforts over the past year have shown us there’s a lot of work to do to advance treatment research in Fragile X. We want to advance scientific understanding and treatment research in Fragile X-associated disorders. This is a big mission and means we need to look at research from many angles: Treatments are not just medications, they can be language, speech, behavior, and other interventions that can be just as impactful and can change the quality of life for individuals and families living with Fragile X.
Each of the programs and services under the NFXF Research Facilitation portfolio support scientific understanding and the advancement of treatment research in Fragile X-associated disorders. We make a point of sharing what is going on in our field and why it matters.
our four
strategic priorities
Watch
Learn more about NFXF’s work in research facilitation in this presentation from the 2020 17th NFXF International Fragile X Conference Virtual Series featuring Hilary Rosselot and Dr. Craig Erickson, NFXF Scientific & Clinical Advisory and Clinical Trials committees member.
Hilary Rosselot
Director
Research Facilitation
National Fragile X Foundation
Dr. Craig Erickson
Medical Director
Fragile X Research & Treatment Center
Cincinnati Children’s Hospital
Watch
Learn more about NFXF’s work in research facilitation in this presentation from the 2020 17th NFXF International Fragile X Conference Virtual Series featuring Hilary Rosselot and Dr. Craig Erickson.
Hilary Rosselot is the director of research facilitation at NFXF, and Dr. Craig Erickson is the medical director of the Fragile X Research and Treatment Center at Cincinnati Children’s Hospital. Dr. Erickson is also a member of NFXF’s Scientific & Clinical Advisory and Clinical Trials committees.
We Can’t Do It Without You
We encourage both families and research professionals to participate in Fragile X research. We need more researchers to spearhead new studies and clinical trials, and more families to volunteer to join them in pursuit of new treatments or a cure. We know this is a big commitment, so thank you so much for considering.
Please browse our research categories to learn more.
For individuals, caregivers, and families
We recommend starting with Research 101: What is Research?
For researchers
We recommend starting with our Research Readiness Program.
Not sure where to start?
Look for these symbols:
Individuals, families, and caregivers
Researchers
Teachers
Doctors and other treatment professionals
NFXF Research Projects
Our Current Focused Projects Portfolio
The NFXF is committed to promoting scientific and treatment research advancements for Fragile X-associated disorders through research facilitation, including our NFXF Summer Scholar Research Awards for up-and-coming researchers.
Other current focused projects include: FORWARD Registry & Database, NFXF Data Repository, NFXF-Led Patient-Focused Drug Development meeting, International Fragile X Premutation Registry, Bringing Your STX209 Data Home, and Research Results Roundup.
Research 101: What is Research?
The Ultimate Guide for All Families Living with Fragile X
Research is all about questions. Not just the scientists’ questions — better known as hypotheses — but questions from potential research participants. What is research? Why is it important? The list goes on and on. The NFXF explores these questions and other important research concepts, including our new Research 101 eBook.
MyFXResearch Portal
Find Your Next Research Opportunity
The NFXF is devoted to providing the most up-to-date research opportunities for individuals and families. MyFXResearch provides a user-friendly experience, allowing you to search research opportunities, find the right fit, and contact the study team — all at your fingertips.
There really is something for everyone: surveys, studies, clinical trials, oh my!
NFXF Research Readiness Program
Building Meaningful Partnerships With All Researchers
Learn more about our collaborative pipeline to support the development and execution of research in Fragile X-associated disorders.
Our Research Readiness Program provides every researcher in the Fragile X field the opportunity to engage with experts and families to ensure proposed research is scientifically sound, relevant, and patient-centric. This innovative program grounds us in what research is about — creating meaningful change and hope for families living with Fragile X.
The Fragile X Clinical & Research Consortium
Locate a Fragile X Clinic Near You
Created in 2006 in response to the growing needs of families, each Fragile X clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of the three identified Fragile X conditions: Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency.
Treatment Recommendations
Consensus Documents on Treatments and Interventions for Fragile X
We are committed to supplying families — as well as researchers, teachers, doctors, and other professionals — with updated information on current treatment guidelines and recommendations with help from professional and parent members of the Fragile X Clinical & Research Consortium.
Topics include: FXS, FXTAS, FXPOI, autism, behavioral issues, hyperarousal, physical problems, seizures, sensory integration, sleep, toileting, assessment and genetic counseling, educational guidelines, adult transition resources, medications, complementary and alternative therapies, and family support and resources.
Questions?
If you have questions about anything research-related, we’d love to hear from you! You can reach out to Hilary Rosselot directly, or submit your question or comment through our contact form.
Hilary Rosselot,
Director of Research Facilitation
research@fragilex.org
(202) 747-6207
Questions?
If you have questions about anything research-related, we’d love to hear from you! You can reach out to Hilary Rosselot directly, or submit your question or comment through our contact form.
Hilary Rosselot,
Director of Research Facilitation
research@fragilex.org
(202) 747-6207
Last Updated: 12/22/2021
Thank you to the image authors: Image by PublicDomainPictures from Pixabay; Image by Free-Photos from Pixabay