Rare Disease Clinical Survey
Please complete this survey to help improve understanding and care for those affected by rare diseases. Your responses are confidential and will be used for research purposes only.
Participant Information
Tell us about yourself.
Full Name
*
First Name
Last Name
Date of Birth
*
 -
Month
 -
Day
Year
2 digit month, 2 digit day, 4 digit year
Date
Gender
*
Male
Female
Other
Contact Email
*
example@example.com
Diagnosis Information
Please provide details about your rare disease diagnosis.
What is your diagnosed rare disease?
*
Age at Diagnosis
*
Current Symptoms (Please rate the severity of each symptom)
*
Rows
None
Mild
Moderate
Severe
Fatigue
1
2
3
4
Pain
5
6
7
8
Mobility Issues
9
10
11
12
Digestive Symptoms
13
14
15
16
Other
17
18
19
20
Treatment History
Tell us about your treatments.
What treatments have you received for your condition? (Select all that apply)
*
Medication
Physical Therapy
Surgery
Experimental Therapy/Clinical Trial
Other
How would you rate the overall effectiveness of your treatment(s)?
*
1
2
3
4
5
Quality of Life Impact
Please indicate how your condition affects your daily life.
How much does your condition impact your daily activities?
*
No impact
1
2
3
4
5
6
7
8
9
Severe impact
10
1 is No impact, 10 is Severe impact
Please share any additional comments or experiences related to your condition.
Submit Survey
Should be Empty: