The guidelines for doctors to provide data is as follows:
Provide any data that your hospital or clinic currently has that compares to the SEER data, or if none has been published to date, please compute and send the data so you can be included in the web site. This would be 2 year data for newly diagnosed patients in 2011 and 2012, and 4 year data for the years 2009 and 2010. Please also note that each two year period must have no less than 50 patient to be included. Please also provide your total number of current multiple myeloma patients under your care. This would then be compared to the most recent available SEER data. Please also provide the average age of each 2 and 4 year patient group. Please send the data to firstname.lastname@example.org.
The SEER data is based on Relative survival, which is actual survival adjusted for non myeloma cancer related deaths. If currently available, the data to provide is existing available survival data for your myeloma program which is comparable to the SEER data. If you have this data, it is based on relative survival, and has already been adjusted. The SEER program identifies survival as:
Cancer Survival Statistics(SEER)
Cancer survival statistics are expressed as the proportion of patients alive at some point subsequent to the diagnosis of their cancer. Relative survival is an estimate of the percentage of patients who would be expected to survive the effects of their cancer. Observed survival is the actual percentage of patients still alive at some specified time after diagnosis of cancer. It considers deaths from all causes, cancer or otherwise. Smoldering myeloma is included in the SEER number, so make sure you include it as well.
If you will be supplying Observed survival data, We will then adjust your numbers to reflect the Relative survival. The current average age of a myeloma patient is 69. Therefore, the age adjustment amounts to adding 3.89% to your 2 year survival data and 7.78% to your 4 year data which adjusts for the normal death rate of the average person who is 69 years of age. This is based on the current Social Security actuarial death rate tables. The information will then be listed in alphabetic order by region so patients can find the best available in their region and nationally. Please identify your data as either relative or observed survival so that it can be represented correctly on this site. All data not identified as relative or observed will not be adjusted.