Survey

Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism's(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a recent clinical trial. In response to these events, we have developed a survey to help us better understand aspects contributing to PE in PWS including deep vein thrombosis (DVT'S) which can lead to PE’s. We would like all parents or caregivers of children and adults with PWS of all ages, living or deceased to fill out this survey (even without history of clots) because there are several variables that we need to review. PLEASE HELP US LEARN MORE ABOUT THIS DANGEROUS CONDITION AND FILL OUT THIS SURVEY TODAY!

*The procedure involves filling out this online survey that will take approximately 15 minutes. Your responses will be confidential and we will not share identifying information such as your name, email address or IP address. All data will be stored in a password protected electronic format.  The results of this study will be used for statistical analysis and will ONLY be shared with authorized researchers contracted by Prader-Willi Syndrome Association (USA).  

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* 1. Name of person with PWS

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* 2. Sex of person with PWS

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* 3. Date of Birth

Date

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* 4. If the person is deceased, cause of death

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* 5. Last known height: inches

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* 6. Last known weight: pounds

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* 7. Highest weight: pounds

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* 8. What age was their highest weight?

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* 9. Was genetic testing done for PWS?

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* 10. Was the individual found to be methylation positive for PWS?

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* 11. What PWS subtype was identified?

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* 12. If the individual is deletion subtype then are they,

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* 13. Was the person with PWS ever on growth hormone?

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* 14. Is the person a severe skin picker?

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* 15. Is the person with PWS a smoker or former smoker?

Does the individual with PWS have any of the following conditions?

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* 16. Was the person ever obese?

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* 17. Metabolic syndrome?

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* 18. Diabetes mellitus?

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* 19. Renal (kidney) disease?

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* 20. A history of lower leg swelling (edema)?

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* 21. Hypertension (high blood pressure)?

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* 22. Vasculitis (inflammation of the blood vessels)?

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* 23. Atrial fibrillation (heart rhythm problem)?

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* 24. Heart failure?

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* 25. Atherosclerosis (coronary artery disease)?

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* 26. Antiphospholipid Antibody syndrome (an autoimmune clotting disorder)?

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* 27. Any Bone Marrow Disorders?

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* 28. Thrombocythemia (high platelet count)?

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* 29. Thrombotic Thrombocytopenic Purpura and Disseminted Intravascule Coagulation (rare blood clotting disorders)?

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* 30. Was the person ever diagnosed or treated for cancer?

Family history of parents and siblings of the individual with PWS

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* 31. Is there a family history of blood clots?

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* 32. Is there family history of any of the following specific clotting/blood disorders:

  Yes No Unknown
Factor 5 Leiden deficiency?
Prothrombin (factor 2) deficiency?
Methylene tetrahydrofolate reductase (MTHFR) deficiency?
Protein S deficiency?
Protein C deficiency?
Was the individual with PWS EVER taking the following medications?

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* 33. Aspirin therapy to prevent clotting?

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* 34. Blood thinners (Coumadin, Lovenox, Heparin, Plavix, etc.)?

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* 35. For Females: Medicines that may contain estrogen such as birth control pills or hormone therapy?

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* 36. For Males: testosterone?

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* 37. Low (hypo) thyroid treatment?

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* 38. High (hyper) thyroid treatment?

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* 39. Adrenal gland treatment such as cortisol medication?

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* 40. Has the person with PWS ever had DVT/Clots/thrombosis?

If #40 is No then skip to question 61.

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* 41. At what age(s) did the DVT/clots/thrombosis occur?

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* 42. At what age was the most severe episode?

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* 43. Was this severe episode fatal?

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* 44. What was the type of severe episode?

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* 45. Was the occurrence associated with a recent injury or surgical procedure?

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* 46. Was the person with PWS obese at the time of the episode?

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* 47. Was the person with PWS diabetic at the time of the episode?

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* 48. Was the person with PWS on growth hormone at the time of the episode?

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* 49. Was the person with PWS taking any other hormones at the time of the episode?

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* 50. If #49 is yes, then what hormones?

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* 51. Was the clot

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* 52. Was hospitalization required?

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* 53. Were blood tests (D-dimer) to look for clots abnormal?

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* 54. Did the individual with PWS complain of pain with the clot?

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* 55. On a scale of 0 (no pain) to 5 (severe pain) rate the pain

  1 2 3 4 5
Level of Pain

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* 56. Did the clot or clots resolve?

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* 57. Did the clot re-occurr?

If the clot was in the LEG,

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* 58. Was there leg swelling at time of clot?

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* 59. Was there brownish or reddish discoloration on the lower legs at the time of the clot?

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* 60. Were compression stockings used?

Person filling out this form

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* 61. Name

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* 62. Relationship to person with PWS

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* 63. Address

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* 64. Email

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* 65. Phone number

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* 66. May PWSA (USA) call or email you if any additional answers are needed?

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* 67. Date this survey was completed

Date

T