PFDD survey on adults living with Familial Hypophosphatemia
Thank you for taking a few minutes to complete this survey. Your responses, combined with others, will be used to share important information about patients with familial hypophosphatemia to educate stakeholders including the FDA about related diseases during XLH Weekend in October.

Note: Familial hypophosphatemia refers to genetically-caused hypophosphatemia, including X-linked hypophosphatemia (XLH), autosomal dominant hypophosphatemia and autosomal recessive hypophosphatemia.

Year of Birth *
Your answer
Gender *
Were you treated with phosphorus and/or calcitriol during childhood? (Choose just one.) *
Which symptom of familial hypophosphatemia has the biggest negative impact on your life? (Choose just one.) *
Which symptom of familial hypophosphatemia has the second biggest negative impact on your life? (Choose just one.) *
Were your symptoms mild, moderate, or severe *
Mild
Moderate
Severe
Not Sure
Not Applicable
during childhood?
Age 20-35
Age 36-50
Age 51-65
65-80
81 and above
Since the symptoms of familial hypophosphatemia tend to be chronic, you may feel better or worse from day to day. With that in mind, and thinking about your worst days, what is the worst (highest) level of negative impact that familial hypophosphatemia has on your daily life? *
Thinking about your best days, what is the least (lowest) level of negative impact that familial hypophosphatemia has on your daily life. *
Thinking about your average days, what is the least (lowest) level of negative impact that familial hypophosphatemia has on your daily life. *
Do your symptoms of familial hypophosphatemia limit your ability to engage in any of the following activities as much as you'd like? (Choose all that are applicable.) *
Required
If you are currently being treated to normalize the phosphorus levels in your blood, which treatment(s) are you using? (Choose as many as apply.) *
Required
If you are currently being treated for chronic pain, which treatment(s) are you using? (Choose as many as apply.) *
Required
While a new treatment has been approved for XLH, there is still work to be done to find a complete cure. Until then, what matters most to you about any interim treatment options? (Choose just one.) *
If there's anything else you'd like to tell clinicians, researchers and the U.S. Food and Drug Administration about living with familial hypophosphatemia as an adult, please enter your comments here:
Your answer
Submit
Never submit passwords through Google Forms.
This content is neither created nor endorsed by Google. Report Abuse - Terms of Service - Additional Terms