BHDSyndrome.org - Families Feedback
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www.BHDsyndrome.org Families Feedback
1
. How did you hear about www.BHDsyndrome.org?
How did you hear about www.BHDsyndrome.org?
BHD Family Alliance Website
Myrovlytis Trust Website
Google
Wikipedia
Recommended by a friend
Other (please specify)
2
. How often do you visit www.BHDSyndrome.org?
How often do you visit www.BHDSyndrome.org?
Once a week
More than once a week
Once a month
3
. How would you rate the information provided in the 'What is BHD?' section of the Families area? Please select N/A if you do not visit a specific area.
Excellent
Good
Average
Poor
N/A
Introduction to BHD
How would you rate the information provided in the 'What is BHD?' section of the Families area? Please select N/A if you do not visit a specific area. Introduction to BHD Excellent
Introduction to BHD Good
Introduction to BHD Average
Introduction to BHD Poor
Introduction to BHD N/A
Skin Symptoms
Skin Symptoms Excellent
Skin Symptoms Good
Skin Symptoms Average
Skin Symptoms Poor
Skin Symptoms N/A
Lung Symptoms
Lung Symptoms Excellent
Lung Symptoms Good
Lung Symptoms Average
Lung Symptoms Poor
Lung Symptoms N/A
Kidney Symptoms
Kidney Symptoms Excellent
Kidney Symptoms Good
Kidney Symptoms Average
Kidney Symptoms Poor
Kidney Symptoms N/A
Other Symptoms
Other Symptoms Excellent
Other Symptoms Good
Other Symptoms Average
Other Symptoms Poor
Other Symptoms N/A
Other Hereditary Kidney Cancer Syndromes
Other Hereditary Kidney Cancer Syndromes Excellent
Other Hereditary Kidney Cancer Syndromes Good
Other Hereditary Kidney Cancer Syndromes Average
Other Hereditary Kidney Cancer Syndromes Poor
Other Hereditary Kidney Cancer Syndromes N/A
Do I have BHD?
Do I have BHD? Excellent
Do I have BHD? Good
Do I have BHD? Average
Do I have BHD? Poor
Do I have BHD? N/A
If you rated any section as 'Average' or 'Poor' could you please suggest ways to improve them? Alternatively if you highly commend an area, could you expand on why you find it useful?
4
. How would you rate the information provided in the 'Diagnosis/Treatment' section of the Families area? Please use N/A if you do not visit a specific section.
Excellent
Good
Average
Poor
N/A
Introduction to diagnosis/treatment
How would you rate the information provided in the 'Diagnosis/Treatment' section of the Families area? Please use N/A if you do not visit a specific section. Introduction to diagnosis/treatment Excellent
Introduction to diagnosis/treatment Good
Introduction to diagnosis/treatment Average
Introduction to diagnosis/treatment Poor
Introduction to diagnosis/treatment N/A
Gene Test
Gene Test Excellent
Gene Test Good
Gene Test Average
Gene Test Poor
Gene Test N/A
Skin Treatment
Skin Treatment Excellent
Skin Treatment Good
Skin Treatment Average
Skin Treatment Poor
Skin Treatment N/A
Lung Treatment
Lung Treatment Excellent
Lung Treatment Good
Lung Treatment Average
Lung Treatment Poor
Lung Treatment N/A
Kidney Treatment
Kidney Treatment Excellent
Kidney Treatment Good
Kidney Treatment Average
Kidney Treatment Poor
Kidney Treatment N/A
Genetic Counselling
Genetic Counselling Excellent
Genetic Counselling Good
Genetic Counselling Average
Genetic Counselling Poor
Genetic Counselling N/A
Genetic Discrimination
Genetic Discrimination Excellent
Genetic Discrimination Good
Genetic Discrimination Average
Genetic Discrimination Poor
Genetic Discrimination N/A
Insurance
Insurance Excellent
Insurance Good
Insurance Average
Insurance Poor
Insurance N/A
Overall Health/Other
Overall Health/Other Excellent
Overall Health/Other Good
Overall Health/Other Average
Overall Health/Other Poor
Overall Health/Other N/A
Research
Research Excellent
Research Good
Research Average
Research Poor
Research N/A
If you rated any section as 'Average' or 'Poor' could you please suggest ways to improve them? Alternatively if you highly commend an area, could you expand on why you find it useful?
5
. How would you rate the information provided in the 'Tools' section of the Families area? Please choose N/A of you do not use a specific section.
Excellent
Good
Average
Poor
N/A
Tools overview
How would you rate the information provided in the 'Tools' section of the Families area? Please choose N/A of you do not use a specific section. Tools overview Excellent
Tools overview Good
Tools overview Average
Tools overview Poor
Tools overview N/A
Follow-up suggestions
Follow-up suggestions Excellent
Follow-up suggestions Good
Follow-up suggestions Average
Follow-up suggestions Poor
Follow-up suggestions N/A
Doctors Interested in BHD
Doctors Interested in BHD Excellent
Doctors Interested in BHD Good
Doctors Interested in BHD Average
Doctors Interested in BHD Poor
Doctors Interested in BHD N/A
BHD Worldwide
BHD Worldwide Excellent
BHD Worldwide Good
BHD Worldwide Average
BHD Worldwide Poor
BHD Worldwide N/A
Links
Links Excellent
Links Good
Links Average
Links Poor
Links N/A
If you rated any section as 'Average' or 'Poor' could you please suggest ways to improve them? Alternatively if you highly commend an area, could you expand on why you find it useful?
6
. How often do you visit the BHDsyndrome.org forum?
How often do you visit the BHDsyndrome.org forum?
Never
Once a week
More than once a week
Once a month
7
. Have you ever submitted a comment to the forum?
Have you ever submitted a comment to the forum?
Yes
No
If you answered 'No' is there anything that would encourage you to contribute to the forum in the future?
8
. Do you read the BHD Research Blog?
Do you read the BHD Research Blog?
Yes
No
If 'No' why not?
9
. Do you subscribe to any RSS feeds on www.BHDSyndrome.org?
Do you subscribe to any RSS feeds on www.BHDSyndrome.org?
Yes
No
Don't know what that is
10
. What is your general opinion of www.BHDSyndrome.org?
What is your general opinion of www.BHDSyndrome.org?
Excellent
Very Good
Good
Satisfactory
Below Average
Poor
Do you have any suggestions of how www.BHDsyndrome.org could be improved? Alternatively, if you feel that there are some areas that excel could you please let us know.
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