Federally funded research into fragile X syndrome will look at the biological factors of the disorder and ways to better diagnose and treat it, according to a research plan released by the National Institutes of Health (NIH) Monday.

The plan comes from working groups established by the NIH in 2008. It will guide the agency in determining the best course of action in researching fragile X, the most common form of inherited intellectual disability, and two associated conditions — fragile X-associated tremor/ataxia syndrome and fragile X-associated primary ovarian insufficiency.

NIH priorities in researching fragile X include:

• Studying the physiology behind fragile X.
• Determining how widespread the gene that causes fragile X is.
• Conducting wider screening for fragile X so that people are diagnosed in a more timely manner.
• Conducting large-scale studies of treatment options.
• Determining what impact fragile X has on families.
• Creating a mechanism to share research information so scientists can maximize data and promote collaboration.

“Collectively, these disorders represent a major health burden and have far-reaching implications for individuals as well as their family members,” said Tiina Urv, chair of the trans-NIH Fragile X Research Coordinating Group. “These disorders may affect multiple family members and multiple generations.”

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