I am conducting research concerning the treatment of Myelodysplastic Syndromes. My target population is physicians and nurses who treat these patients.
I have focused on those who see 10 or more MDS patients per year in an effort to reach those with a good understanding of the disease and treatment options. My response rate is extremely low. I'm wondering if 10 is to many.
Would you consider yourself active in the community addressing a rare disease if you see 3 per year? 5?
I would have thought 10/year was sufficient to conduct such a study. But from your experience, I guess you are even in a better situation to review it downwards since you may already have data as to how many centres were "turned down" on account of managing fewer cases. The magic number could be anywhere between 5 & 10/year.
It could also be an issue with the stringency of your study's diagnostic criteria, and the inability of some centres to carry out the minimum diagnostic work-up.
The incidence of MDS is approximately 4/100 000 population/year, but it is predominantly a disease of the elderly with an incidence of > 30/100 000/year over the age of 70 years (BCSH guidelines on MDS 2014). A haematology unit of any significant size will have a good deal more patients that 10/year. Less than 10 will not give you the experience you need.
Quentin A Hill The statistics you provide are similar to the US statistics. In our healthcare system many of these patients are managed by physicians in their communities not those at major medical centers. My experience supports what you are saying about hematology units although the majority of MDS patients here are managed outside of the hospital setting. Studies about the practice of those treating rare diseases are challenging BECAUSE their are limited resources for them. That is why I believe it is imperative that we examine our methodologies and beliefs about these patients to prevent unintentionally under treating a treatable, even curable form of cancer.
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