STURGE-WEBER SYNDROME RESEARCH INTERESTS AND PROVIDER CHALLENGES

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The following survey will assist the Sturge-Weber Foundation to rank areas of interest in basic and clinical research and the challenges SWS patients and families experience in getting optimal care.

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* 1. What is the patient's gender?

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* 2. What is the patient's age?

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* 3. What city do you currently live in?

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* 4. What is your first language?

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* 5. What is your nationality?

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* 6. Please rank the top three areas of interest for clinical research (1-6):

	Extremely Interested	Very Interested	Interested	Not As Interested	No Interest
Quality of life matters (education, family dynamics, social issues, etc.)	Quality of life matters (education, family dynamics, social issues, etc.) Extremely Interested	Quality of life matters (education, family dynamics, social issues, etc.) Very Interested	Quality of life matters (education, family dynamics, social issues, etc.) Interested	Quality of life matters (education, family dynamics, social issues, etc.) Not As Interested	Quality of life matters (education, family dynamics, social issues, etc.) No Interest
Mental health matters (anxiety, depression, etc.)	Mental health matters (anxiety, depression, etc.) Extremely Interested	Mental health matters (anxiety, depression, etc.) Very Interested	Mental health matters (anxiety, depression, etc.) Interested	Mental health matters (anxiety, depression, etc.) Not As Interested	Mental health matters (anxiety, depression, etc.) No Interest
Endocrinology studies (height, weight, cortisol, thyroid, etc.)	Endocrinology studies (height, weight, cortisol, thyroid, etc.) Extremely Interested	Endocrinology studies (height, weight, cortisol, thyroid, etc.) Very Interested	Endocrinology studies (height, weight, cortisol, thyroid, etc.) Interested	Endocrinology studies (height, weight, cortisol, thyroid, etc.) Not As Interested	Endocrinology studies (height, weight, cortisol, thyroid, etc.) No Interest
Headache and related matters	Headache and related matters Extremely Interested	Headache and related matters Very Interested	Headache and related matters Interested	Headache and related matters Not As Interested	Headache and related matters No Interest
Ophthalmology matters (visual field, eye pressure, new treatments, prosthetics, visual aids. etc.)	Ophthalmology matters (visual field, eye pressure, new treatments, prosthetics, visual aids. etc.) Extremely Interested	Ophthalmology matters (visual field, eye pressure, new treatments, prosthetics, visual aids. etc.) Very Interested	Ophthalmology matters (visual field, eye pressure, new treatments, prosthetics, visual aids. etc.) Interested	Ophthalmology matters (visual field, eye pressure, new treatments, prosthetics, visual aids. etc.) Not As Interested	Ophthalmology matters (visual field, eye pressure, new treatments, prosthetics, visual aids. etc.) No Interest
Immune suppression	Immune suppression Extremely Interested	Immune suppression Very Interested	Immune suppression Interested	Immune suppression Not As Interested	Immune suppression No Interest
Neurological matters	Neurological matters Extremely Interested	Neurological matters Very Interested	Neurological matters Interested	Neurological matters Not As Interested	Neurological matters No Interest

Other (please specify)

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* 7. Please rank your top three areas of interest in basic research:

	Extremely Interested	Very Interested	Interested	No As Interested	No Interest
Blood Flow Studies	Blood Flow Studies Extremely Interested	Blood Flow Studies Very Interested	Blood Flow Studies Interested	Blood Flow Studies No As Interested	Blood Flow Studies No Interest
Genetic Studies ( develop animal models, cell receptors and pathways, etc.)	Genetic Studies ( develop animal models, cell receptors and pathways, etc.) Extremely Interested	Genetic Studies ( develop animal models, cell receptors and pathways, etc.) Very Interested	Genetic Studies ( develop animal models, cell receptors and pathways, etc.) Interested	Genetic Studies ( develop animal models, cell receptors and pathways, etc.) No As Interested	Genetic Studies ( develop animal models, cell receptors and pathways, etc.) No Interest
Blood Brain Barrier Studies	Blood Brain Barrier Studies Extremely Interested	Blood Brain Barrier Studies Very Interested	Blood Brain Barrier Studies Interested	Blood Brain Barrier Studies No As Interested	Blood Brain Barrier Studies No Interest
Glaucoma	Glaucoma Extremely Interested	Glaucoma Very Interested	Glaucoma Interested	Glaucoma No As Interested	Glaucoma No Interest
Tissue Overgrowth Studies	Tissue Overgrowth Studies Extremely Interested	Tissue Overgrowth Studies Very Interested	Tissue Overgrowth Studies Interested	Tissue Overgrowth Studies No As Interested	Tissue Overgrowth Studies No Interest
Immune Studies	Immune Studies Extremely Interested	Immune Studies Very Interested	Immune Studies Interested	Immune Studies No As Interested	Immune Studies No Interest
Cognitive Delays	Cognitive Delays Extremely Interested	Cognitive Delays Very Interested	Cognitive Delays Interested	Cognitive Delays No As Interested	Cognitive Delays No Interest
Neurological Studies	Neurological Studies Extremely Interested	Neurological Studies Very Interested	Neurological Studies Interested	Neurological Studies No As Interested	Neurological Studies No Interest

Other (please specify)

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* 8. How many appointments did you attend before reaching a diagnosis of SWS for your loved one?

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* 9. How many differing opinions did you encounter from healthcare professionals regarding the SWS diagnosis?

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* 10. What has been the biggest challenge you have experienced since the SWS diagnosis?

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* 11. What education materials have you found most helpful?

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* 12. Are there education pieces you feel are lacking? Please comment if so.

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* 13. Do you have to travel for medical appointments?

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* 14. How often?

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* 15. How often would you be will to visit the doctors office to have the information procured?

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* 16. If you do not travel, is cost a prohibiting factor?

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* 17. How far would you be willing to travel (local, state, regional, national) knowing expenses would not be covered?

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* 18. Would you be willing to sign a consent form to participate in clinical research (blood draw, saliva sample, biopsy)?

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* 19. Have you completed/updated the Sturge-Weber International Registry within the last six months? (Click here to go directly to the SWS Registry)