Malignant Peripheral Nerve Sheath Tumors and Neurofibromatosis Type 1
Thank you so much for participating in this survey! The survey should take approximately 1520 minutes to complete.
* Required
1. Present age: *
2. Sex: *
Mark only one oval.
Female Male Other:
3. Have you ever received a diagnosis of malignant peripheral nerve sheath tumor (MPNST)? * Mark only one oval.
Yes Skip to question 4.
No Skip to question 10.
Don't know Skip to question 10.
MPNST History
4. If you selected yes to the previous question, at what age were you diagnosed with MPNST? * Mark only one oval.
09 1019 2029 3039 4049 5059 60 and older
5. What were the presenting symptoms? * Mark only one oval.
Localized disease Metastatic disease
6. Where was the MPNST located? * Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Other:
7. How was the diagnosis made? * Please check all that apply.
Check all that apply.
Clinically
Magnetic Resonance Imaging (MRI) Biopsy
Fluorodeoxyglucose positron emission tomography (FDGPET) Other:
8. Do you have family members with a history of cancer other than MPNST? * Mark only one oval.
Yes No
Don't know
9. If you selected yes to the above question, what types of cancer?
Neurofibromatosis Type 1 History
10. At what age were you diagnosed with NF1? * Mark only one oval.
09 1019 2029 3039 4049 5059 60 and older
11. What were your symptoms? * Please check all that apply.
Check all that apply.
6 or more café au lait spots
Greater than 2 freckles in the armpit area and/or greater than 2 freckles in the groin area Lisch nodules
Dermal neurofibromas Forearm bowing Lower leg bowing, Other:
12. Have you ever undergone an NF1 gene test? * Mark only one oval.
Yes No
Don't know
13. If available, what was the result?
14. Have you been diagnosed with neurofibromas? * Please check all that apply.
Check all that apply.
Cutaneous neurofibromas Subcutaneous neurofibromas Plexiform neurofibromas
I have not been diagnosed with neurofibromas Don’t know
Other:
15. Where were neurofibromas located? * Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Other:
MPNST in relatives
16. Do you have any blood relatives who have received a diagnosis of MPNST? * Mark only one oval.
Yes Skip to question 18.
No Skip to question 17.
Don't know Skip to question 17.
NF1 in relatives
17. Do you have any blood relatives who have received a diagnosis of NF1? * Mark only one oval.
Yes Skip to question 24.
No Skip to question 51.
Don't know Skip to question 51.
MPNST in relatives, continued
18. If you selected yes to the previous question, what is your relationship to the individual? * Mark only one oval.
Mother Father Full sister Full brother Son Daughter
Half sister (paternal) Half brother (paternal) Half sister (maternal) Half brother (maternal) Aunt (paternal) Uncle (paternal) Aunt (maternal) Uncle (maternal) Paternal grandfather Paternal grandmother Maternal grandmother Maternal grandfather Niece (from a full brother) Nephew (from a full brother) Niece/nephew (from a full sister) Nephew (from a full sister) Other
19. At what age did the relative receive the diagnosis of MPNST? * Mark only one oval.
09 1019 2029 3039 4049 5059 60 and older Don't know
20. How was the diagnosis made? * Please check all that apply.
Check all that apply.
Clinically
Magnetic Resonance Imaging (MRI) Biopsy
Fluorodeoxyglucose positron emission tomography (FDGPET) Don't know
Other:
21. What were the presenting symptoms? * Mark only one oval.
Localized disease Metastatic disease Don't know
Other:
22. Where was the MPNST located? * Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Don't know Other:
23. Did this relative also have a diagnosis of NF1? * Mark only one oval.
Yes Skip to question 24.
No Skip to question 30.
Don't know Skip to question 30.
Neurofibromatosis Type 1 in relatives
24. If you selected yes to the previous question, at what age was the relative diagnosed with NF
1? *
Mark only one oval.
09 1019 2029 3039 4049 5059 60 and older Don't know
25. To the best of your knowledge, has the relative ever undergone an NF1 gene test? * Mark only one oval.
Yes No
Don't know
26. If available, what was the result?
27. To the best of your knowledge, does the relative participate in the Neurofibromatosis Registry? *
Mark only one oval.
Yes No
Don't know
28. Does the relative have neurofibromas? (Please choose all that apply) * Please check all that apply.
Check all that apply.
Cutaneous neurofibromas Subcutaneous neurofibromas Plexiform neurofibromas Don’t know
Other:
29. What is the location of the relative's neurofibromas located? * Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Don't know Other:
Additional relatives with MPNST
30. Do you have another relative who has received a diagnosis of MPNST? * Mark only one oval.
Yes Skip to question 31.
No Skip to question 51.
Don't know Skip to question 51.
MPNST in relatives, continued
31. What is your relationship to the other relative who received a diagnosis of MPNST? * Mark only one oval.
Mother Father Full sister Full brother Son Daughter
Half sister/brother (paternal) Half sister/brother (maternal) Aunt/uncle (paternal)
Aunt/uncle (maternal) Paternal grandparent Maternal grandparent
Niece/nephew (from a full brother) Niece/nephew (from a full sister) Other
32. At what age did the relative receive the diagnosis of MPNST? * Mark only one oval.
09 1019 2029 3039 4049 5059 60 and older Don't know
33. How was the diagnosis made? * Please check all that apply.
Check all that apply.
Clinically
Magnetic Resonance Imaging (MRI) Biopsy
Fluorodeoxyglucose positron emission tomography (FDGPET) Don't know
Other:
34. What were the presenting symptoms? * Mark only one oval.
Localized disease Metastatic disease Don't know
Other:
35. Where was the MPNST located? * Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Don't know Other:
36. Did this relative also have a diagnosis of NF1? * Mark only one oval.
Yes Skip to question 44.
No Skip to question 51.
Don't know Skip to question 51.
MPNST in relatives, continued
37. How many relatives do you have that have received a diagnosis of MPNST? *
38. What is your relationship the relatives with MPNST? * Please select all that apply.
Check all that apply.
Mother Father Full sister Full brother Son Daughter
Half sister/brother (paternal) Half sister/brother (maternal) Aunt/uncle (paternal)
Aunt/uncle (maternal) Paternal grandparent Maternal grandparent
Niece/nephew (from a full brother) Niece/nephew (from a full sister) Other:
39. At what age did the relative(s) receive the diagnosis of MPNST? * Check all that apply.
09 1019 2029 3039 4049 5059 60 and older Don't know Other:
40. How was the diagnosis made?
Please check all that apply.
Check all that apply.
Clinically
Magnetic Resonance Imaging (MRI) Biopsy
Fluorodeoxyglucose positron emission tomography (FDGPET) Don't know
Other:
41. What were the presenting symptoms?
Mark only one oval.
Localized disease Metastatic disease Don't know
Other:
42. Where was the MPNST located?
Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Don't know Other:
43. Is there any further information/clarification that you would like to share regarding your relatives with MPNST?
Skip to question 51.
NF1 in additional relatives
44. If you selected yes to the previous question, at what age was the previous diagnosed with NF
1? *
Mark only one oval.
09 1019 2029 3039 4049 5059 60 and older Don't know
45. To the best of your knowledge, has the relative ever undergone an NF1 gene test? * Mark only one oval.
Yes No
Don't know
46. If available, what was the result?
47. To the best of your knowledge, does the relative participate in the Neurofibromatosis Registry
*
Mark only one oval.
Yes No
Don't know
48. Does the relative have neurofibromas? * Please check all that apply.
Check all that apply.
Cutaneous neurofibromas Subcutaneous neurofibromas Plexiform neurofibromas Don’t know
Other:
49. What is the location of the relative's neurofibromas located? * Please check all that apply.
Check all that apply.
Head/neck Trunk
Upper extremities Lower extremities Don't know Other:
50. Do you have another relative who received a diagnosis of MPNST? * Mark only one oval.
Yes Skip to question 37.
No Skip to question 51.
Don't know Skip to question 51.
Thank you!
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Thank you so much for taking the time to participate in the survey. This research is being conducted by the Department of Pediatric Hematology & Oncology at the Children's Hospital at Montefiore in
collaboration with the Children's Tumor Foundation/NF Registry.
51. Questions or Comments:
