NFXF Research Readiness Program (original) (raw)
Our mission has always been and continues to be providing unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure. As a patient advocacy organization committed to facilitating research, we wear many hats. We define our role in research as “research facilitation.”
NFXF Research Facilitation
Our research facilitation mission is 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. We aim to speed up and increase the probability of getting effective FX and FX-related treatments available to the larger FX community. 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. Advancing treatment research can also be supporting researchers through our Research Readiness Program or advocating for federal funding for research in Fragile X-associated disorders.
Our research facilitation objective is to be the preferred point of contact and broker for any Fragile X researcher or Fragile X development leader by:
Our team works to facilitate research in a multitude of ways, all designed to assist in meaningful progress toward effective treatments and a cure. Learn more in our video:
Research Facilitation
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, NFXF executive director, and Dr. Craig Erickson, NFXF Scientific & Clinical Advisory and Clinical Trials committees member.
Research Facilitation Portfolio
Our Research Facilitation portfolio leverages our skills to create meaningful partnerships with all researchers, from your initial concept through the dissemination of results. We support our research facilitation mission through the NFXF Research Readiness Program, our services menu, focused projects, and advocacy.
The NFXF Research Readiness Program is a collaborative pipeline to support the development and execution of research in Fragile X-associated disorders. The 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. We recommend all researchers engage in the program early for support from concept through the conclusion of the research project.
There are phases of the Research Readiness Program, designed to build relationships and bring researchers — you — into the NFXF community:
1. Initial Contact
Director of Research Facilitation Screening: Reach out to Anna De Sonia via email at research@fragilex.org to discuss your desired outcomes and research focus.
Review Committee Assignment: You are then assigned to a review committee, which includes many Fragile X experts chosen based on interests and expertise to facilitate the best possible consultation.
2. Committee Reviews
Concept Reviews: You have the opportunity to do up to two concept reviews: Talking to experts and families about your concept prior to funding and IRB approval. These reviews are meant to discuss on more “big picture” aspects of the project prior to designing protocol, which gives the committee a visual on where the project is going and how they can help. All final recommendations are summarized in an anonymized report after each consultation.
Invitation to Donate: You are invited to donate or pay for the consultation services. These funds help underwrite the NFXF mission of providing unwavering support to families living with Fragile X.
Protocol Design: You then conduct a protocol design with your assigned committee. This review session is meant to continue to help you build a strong foundation to move forward in your endeavors before approaching IRB and applying for grants.
3. NFXF + Researcher Partnership
NFXF Certification: Once approved through committee consultations, we now feel confident in promoting your research project to the community.
Personalized Engagement Plan: NFXF then works with you to create a personalized engagement plan. Discussion topics include, but are not limited to:
- How to communicate details about the study on the Research Opportunities portal.
- Recruitment and results dissemination plan.
- How else we might provide research facilitation services in order to maximize the opportunity for both families and researchers.
4. Multiple Annual Touchpoints
Going Forward: From there, our partnership and collaboration continues:
- We agree to keep one another up to date — as all good partnerships stem from good and open communication!
- We reevaluate the personalized engagement plan over time as needed.
Questions?
If you have questions about anything research-related, we’d love to hear from you! You can reach out to Anna De Sonia directly at research@fragilex.org.