Statistics for Research

100%

Do you hold the essential piece to the puzzle? With your help, we will move closer to the answers we all seek.
We invite you to complete this brief survey to assist us with essential data collection needed by scientists to move forward. All privacy will be protected, all personal identifiers will be removed.

1. Family Information

Family Information Parent/Guardian Name
Patient Name
Patient Date of Birth
Patient Gender
E-Mail
Phone
Street
City
State
Zip
Country

2. Ethnicity

Ethnicity White

Black

Asian

Hispanic

Native Hawaiian and Other Pacific Islander

American Indian and Alaska Native

3. Diagnosis

Diagnosis Sturge-Weber syndrome	Port Wine Stain	Klippel-Trenaunay syndrome
Other Information

4. Facial PWS Location

	Right	Center	Left
Forehead	Facial PWS Location Forehead Right	Center	Left
Above Eye	Above Eye Right	Center	Left
Below Eye	Below Eye Right	Center	Left
Cheek	Cheek Right	Center	Left
Nose	Nose Right	Center	Left
Upper Lip	Upper Lip Right	Center	Left
Chin	Chin Right	Center	Left
Neck	Neck Right	Center	Left

Other Information

5. Body PWS Location & Klippel-Trenaunay

	Right	Center	Left	KT
Arm	Body PWS Location & Klippel-Trenaunay Arm Right	Center	Left	KT
Hand	Hand Right	Center	Left	KT
Torso (front)	Torso (front) Right	Center	Left	KT
Torso (back)	Torso (back) Right	Center	Left	KT
Leg	Leg Right	Center	Left	KT
Foot	Foot Right	Center	Left	KT

Other Information

6. Ophthalmology Issues

	Right Eye	Left Eye
Glaucoma	Ophthalmology Issues Glaucoma Right Eye	Left Eye
Detached Retina	Detached Retina Right Eye	Left Eye
Visual Field Defect	Visual Field Defect Right Eye	Left Eye
Blind	Blind Right Eye	Left Eye
Strabismus	Strabismus Right Eye	Left Eye
Ambylopia	Ambylopia Right Eye	Left Eye

Other Information

7. Neurology Issues

Neurology Issues Seizures Stroke Headaches Migraines	Learning Disabilities Cognitive Impairment Hydrocephalus AVM	Cerebral Palsy Paralysis VNS Hemispherectomy
Other Information

8. Brain Involvement

	Right	Left	Calcification	Atrophy
Frontal	Brain Involvement Frontal Right	Left	Calcification	Atrophy
Parietal	Parietal Right	Left	Calcification	Atrophy
Temporal	Temporal Right	Left	Calcification	Atrophy
Occipital	Occipital Right	Left	Calcification	Atrophy

Other Information

9. Other Medical Issues

Other Medical Issues Autism Spectrum Disorder ADD/ADHD Mood Disorder Multiple Sclerosis	Diabetes Fibromyalgia Hypothyroid Hyperthyroid	Growth Hormone Deficiency High Blood Pressure High cholesterol
Other Information

10. Family Medical Background

	Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
ADD/ADHD	Family Medical Background ADD/ADHD Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Mood Disorder	Mood Disorder Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Multiple Sclerosis	Multiple Sclerosis Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Lupus	Lupus Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Diabetes	Diabetes Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Fibromyalgia	Fibromyalgia Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Hypothyroid	Hypothyroid Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Hyperthyroid	Hyperthyroid Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Growth Hormone Deficiency	Growth Hormone Deficiency Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
High Blood Pressure	High Blood Pressure Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
Seizures	Seizures Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle
High Cholesterol	High Cholesterol Mother	Father	Maternal Grandmother	Maternal Grandfather	Paternal Grandmother	Paternal Grandfather	Maternal Aunt	Maternal Uncle	Paternal Aunt	Paternal Uncle

Thank you for your participation. Please contact Carol Buck, Director of Patient & Family Services for further information. 800-627-5482 / cbuck@sturge-weber.org

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