Fragile X syndrome: Learning what families need, one person at a time.
Fragile X syndrome (FXS) is a rare genetic disorder that has a major effect on a person’s life. It is the most common cause of inherited intellectual disability. During the past several decades, scientists have made advancements in understanding the genetics of FXS; however, to help people with FXS and their families, we need to learn more about the effects of FXS on their day-to-day lives, other conditions that commonly occur with FXS, and the types of interventions and supports that are most effective for different people with FXS and their families.
Because FXS is a rare disorder, researchers who want to learn more may have difficulty finding enough affected individuals to get answers to scientific questions. CDC supported the National Fragile X Foundation to develop the Fragile X Online Registry With Accessible Research Database (FORWARD) to better answer these questions.
FORWARD is now a large source of clinical and demographic information on people with FXS in the United States. This information can be used to better understand the many unanswered questions about FXS. FORWARD data can be used to develop and deliver interventions that improve the health and quality of life of people with FXS and their families and caregivers.
CDC will join other researchers in presenting new research findings from the FORWARD database in the upcoming Fragile X Research Roundup on July 22nd, which is also fragile X awareness day.
Click here to read more about what CDC and partners are doing to learn more about FXS, one person at a time .
Did you know?
Fragile X is now included in the American Board of Pediatrics’ recertification exams for pediatricians.
.png)
No hay comentarios:
Publicar un comentario