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Person with Prader-Willi Syndrome
PWSA(USA) Database Collection

Person with Prader-Willi Syndrome Parent or Other Contact Person
Last Name
Required Field
 		 First Name
Required Field
 		 Last Name
Required Field
 		 First Name
Required Field
 
C/O - company/organization
 Contact(s) or Parents(s) Occupation
Address 1
 Address 1 - if different from one on the left
Address 2
 Address 2 - if different from one on the left
City
 State
 Postal Code
 City
State
 Postal Code
Country
 Country
Date of Birth (MM/DD/YYYY)
Required Field
 		 Sex
 Home Telephone
 Work Telephone
Current Height - in inches
 Current Weight in pounds
 Email
 Fax
Relationship to person with PWS
Do you wish to be contacted about research opportunities?
Are you willing to help by completing additional future questionnaires?
Type of Prader-Willi Syndrome
Date of Diagnosis
Method of Diagnosis

  If Blood Testing (Mark all that apply) Chromosomal Analysis  FISH Molecular/DNA (e.g. methylation) Unknown
List Hospitalizations/Surgeries
Primary Doctor for PWS management (i.e. primary physician, Endocrinologist) (name, address, telephone)

 
Growth Hormone Start Date: End Date:
Prescribed Medication Detailed Explanation of condition including medications:
Major Medical Concerns - Current or Past: (check all that apply)
Weight related Diabetes - age at onset
Sleep apnea

     Diabetes Treatment

Aspiration Hypothyroidism - age at diagnosis
Other respiratory complications Pubic or axillary hair before age 8
Heart Problems Hormone Replacement Therapy (ex: estrogen/ testosterone)
Osteoporosis Gall bladder disease
Curvature of the spine (Scoliosis, kyphosis) Pancreatitis
Fractures - explain
      		Gastric/intestinal disorders
Hip Dysplasia Birth
Other bone - explain
      		Twins - identical  Twins - Fraternal
High Pain Tolerance Assisted reproductive techniques - explain
Severe skin picking Breech
Mitochondrial disorder - explain 
      		Premature - Number of weeks
Seizure - age on onset Emergency c-section
Autistic behavior - explain
      		Tube feeding- Number of weeks
DO NOT give my contact information to my PWSA state chapter Eye -        Strabismus       Patching     Other
   if Other explain

Please check this form for accuracy before submitting it.

        

Updated: 02/21/2008

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