Appendix 2

Complication

Registry questions/specifics
Heart disease   Does the patient have heart disease requiring medications?  
Liver disease   1. Does the patient have clinical findings of liver failure or cirrhosis?  
  2. Has the patient ever had a liver biopsy? Cirrhosis by biopsy: yes/no?  
  The registry recorded evidence of cirrhosis on liver biopsy but not specific data regarding active hepatitis C by biopsy, nor was the indication for biopsy recorded.  
Endocrinopathies   1. Has the patient ever been on sex hormone replacement therapy for hypogonadism?  
  2. Does the patient have thyroid disease requiring treatment?  
  3. Does the patient have parathyroid disease requiring treatment?  
  4. Does the patient have diabetes requiring any of the following:  
  Oral hypoglycemic agents and/or insulin?  
DFO complications   Has the patient had any of the following considered to be related to DFO treatment, requiring adjustment of DFO dose or implementation of a different regimen of DFO or desensitization?  

 
Following that question on the registry intake form was a yes/no past/present table for the each of the complications listed in Table 3.
 

Complication

Registry questions/specifics
Heart disease   Does the patient have heart disease requiring medications?  
Liver disease   1. Does the patient have clinical findings of liver failure or cirrhosis?  
  2. Has the patient ever had a liver biopsy? Cirrhosis by biopsy: yes/no?  
  The registry recorded evidence of cirrhosis on liver biopsy but not specific data regarding active hepatitis C by biopsy, nor was the indication for biopsy recorded.  
Endocrinopathies   1. Has the patient ever been on sex hormone replacement therapy for hypogonadism?  
  2. Does the patient have thyroid disease requiring treatment?  
  3. Does the patient have parathyroid disease requiring treatment?  
  4. Does the patient have diabetes requiring any of the following:  
  Oral hypoglycemic agents and/or insulin?  
DFO complications   Has the patient had any of the following considered to be related to DFO treatment, requiring adjustment of DFO dose or implementation of a different regimen of DFO or desensitization?  

 
Following that question on the registry intake form was a yes/no past/present table for the each of the complications listed in Table 3.
 

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