At the moment there is very little information shared among patients and physicians concerning treatment for desmoplastic small round cell tumor. This questionaire is an effort to create a database to be used by new patients, physicians, nurses, staff, caregivers, and anyone seeking information about the disease.

In order to maintain privacy, patients may request that their names or other identifying features not be used on the public Wiki. Please check off on the questionaire if you do not want this information displayed. Because of our enormous respect for the privacy of DSRCT patients any request made will be honored as soon as possible.

Hopefully once this information is gathered all patients and their families will have a valuable resource.

  1. Name
  2. Age
  3. Location
  4. Hospitals/treating facility
  5. Primary oncologist. Oncologist. Surgeon
  6. Date diagnosed
  7. Misdiagnosed? With what?
  8. Complications
  9. Stage at diagnosis (I, II, III, IV).
  10. Location of primary tumor.
  11. Treatment protocols (P6) - specific details
  12. Response to chemo - yes, no, partial
  13. Types of surgery - how many - dates - result - biopsy, debulking, complete removal
  14. Dates of each treatment. Begin. End.
  15. Radiation details. Did it work? Relapse?
  16. Stem cell rescue or transplant. Dates. Details. Did it work? Relapse?
  17. Experimental treatment? Did it work? Relapse?
  18. Alternative treatment? Did it work? Relapse?
  19. Central line infection?
  20. Neurtrapenia? Blood transfusion?
  21. Clinical Trials? How many? Work or not?
  22. What have you learned? Who would you recommend to treat this disease? Satisfied with medical care?
  23. Is it alright to use patients name? Would you prefer to remain anonymous? Yes. No. Don't care.

  1. Hospitals/treating facility
  2. Treatment protocols (like "P6")- specifics
  3. Response or not to chemo
  4. Type of surgeries -biopsy, debulking, complete removal
  5. Dates
  6. Radiation Details
  7. Stem-cell procedure details.
  8. What worked. What didnt' work.
  • Results - Allows physician to tailor protocol for their own patients needs.


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