Do Drs. have to report AN's to anyone?

[Upstate]

Does anyone know if our Dr.'s have to report AN's to maybe the CDC or some kind of government agency so they can be tracked somehow?  They could tell if certain parts of the country were seeing more AN's than others? Or how many people get diagnosed each year and if it's increasing? Or maybe just give some clues to WHY this happens?  Just wondering...

[MDemisay]

Good question! I'd like to know too! The studies that link it to high fat content diet seem to have gained popularity. Makes me want to stick with vegetarian diet! I 'd like to see if there are conclusive studies! The whole society should be more healthy I think. This society loves to eat fat. I stopped eating hamburger altogether a long time ago because I don't trust the way it's prepared.

Happy Memorial Day without meat products!

Mike

[Jim Scott]

Upstate ~

I checked the CDC website www.cdc.gov and didn't find any specific reporting information regarding acoustic neuromas.  I'm sure local hospitals track what operations are performed there, including AN surgery, but to the best of my knowledge - and I could be wrong - there is no central database that would offer you the kind of region-specific information you're seeking. 

The quest to discover a causative agent for the development of acoustic neuromas may prove to be somewhat quixotic.  They were discovered over a hundred years ago and very likely existed long before that but due to primitive medical knowledge were undiscovered and other explanations were given for what we now know are AN symptoms. 

However, if you can locate the kind of regional data pertaining to AN patients you're seeking, it could be interesting even if not definitive.

Jim

[Tod]

I looked into this about a year and a half ago as I consider seeking funding to build a brain tumor registry for longitudinal follow-up.  I learned that the basis of the system already exists. If you search the CDC website long enough, you will eventually find reference to http://www.cdc.gov/cancer/npcr/training/btr/ describing PL 107-260 the Benign Brain Tumor Cancer Registries Amendment Act.  So, beginning 2004, this has been done.

However, what is missing, in my opinion (which lacks a lot of humility), is the longitudinal follow-up combined with providing access to patients seeking treatment. My vision would be to not only have doctors report discovery and treatment to the CDC, but to continue to report with each each patient follow-up visit on such things as: continuing measures of treatment outcome,, patient attitude, compliance with treatment directives, additional or re-emerging symptoms, and additional treatment. On the public-facing website we would be able to view the number of patients, types of treatments, near- and long-term outcomes, by physician and facility, categorized by type, size and location of tumor.

All of this is possible, but it would add burden to physicians and would cost money and so the question is whether the potential value outweighs those items.

-Tod