Findings

FGFR Syndromes Research Registry Findings:

Note: All answers reflect the patient population from the registry. With time and as we get bigger sample sizes some answers may change (last updated 12/4/24). This Findings list will continue to grow in time, so stay tuned!

33% of the patients have heart related issues. 33% of these patients had surgical intervention and 33% had none.

50% of patients have Hydrocephalus

Note: Not treating this in time can damage the brain and cause long-term neurological deficits.

A surprising 61% of patients have Chiari Malformations

Not treating this in time can cause; Hydrocephalus, Syringomyelia, Tethered Cord Syndrome, Spina
Bifida, and Paralysis.

75% of patients with Hydrocephalus in this registry experience Chronic Headaches

50% of patients with Chiari Malformations in this registry experience Chronic Headaches

TOTAL- 27% of our FGFR patients experience Chronic Headaches