Program seeks Council approval for an initiative titled “Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions.” Fragile X syndrome remains the most common form of inherited intellectual disability, and mutations in the FMR1 gene play a role in several different medical conditions that affect children, adults, and seniors, including Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), which leads to disabling neurological symptoms in middle-aged and elderly adults; and Fragile X-associated Primary Ovarian Insufficiency (FXPOI), which can lead to infertility and/or early menopause in affected women.
Since 2000, Congressional Appropriations language has directed NIH to fund at least 3 multidisciplinary research centers on Fragile X. Since 2017, the Trans-NIH Fragile X coordinating committee, chaired by NICHD, has been leading an effort to revise the NIH Fragile X research plan, with input from multiple NIH institutes, researchers, advocacy organizations, and the public at large.
The goals of the current proposed initiative reflect the goals of this revised strategic plan. This 2020 Fragile X Centers RFA will explicitly require involvement of both basic and clinical investigators, with an aim of intentionally accelerating the translation of basic science discovery to potential clinical interventions. Each center will engage transdisciplinary research teams to support innovative research relevant to FXS and FMR1-associated conditions that respond to priority areas identified in the 2018 NIH Fragile X Strategic Plan.
This initiative is aligned with the NICHD Vision statement to “fully understand the neurobiological bases, delineate the full developmental spectrum and trajectories, and identify the key biologic markers for five behavioral or cognitive disorders.”
It aligns with several IDD Branch priorities, including improved understanding the etiology of IDDs, such as Fragile X syndrome, and improved screening and early diagnosis and development of early interventions and treatments for IDD conditions.
Program Contact
Tracy King
Intellectual and Developmental Disabilities Branch
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