Hello everyone! Today I wanted to outline an idea that has come about as a result of my work with the Schwannoma Survivors & Schwannoma Fighters group. A great many people who have suffered with Schwannomas have endured a lot of confusion - and even have gone through treatment still with many questions unanswered. So today, I wanted to propose a worthy idea to any medical institution or university that may wish to contribute to our knowledge on Schwannomas...
I would like to propose a "Schwannoma Statistics Project." I would like to see a medical facility or university create and monitor a universal database on Schwannoma statics. It would be my hope that such a medical facility or university would create a questionnaire for Schwannoma survivors that would glean as much medical information about Schwannomas as possible - from the many survivors that we have spoken with on our page and elsewhere. And the answers would supply data for the database.
It would be my hope that:
1) A "Schwannoma Statistics Project" ( or SSP ) would gather accurate, universal data that would allow people to answer basic questions like "How common are Schwannomas?" or " What are the average sizes of Schwannomas in various parts of the body?" or "How common are they in the population?"
2) I would propose that any SSP should share its data with other research and medical facilities that are seeking to learn more about Schwannomas.
3) I would hope that specialized questionnaires may be created to service data relating to the condition of Schwannomatosis, and that as much data on Schwannomatosis would be acquired as possible - with a view towards devising new treatments and new understanding of the condition.
4) I would hope that the SSP would help supply data for any medical specialist writing papers on Schwannomas.
5) I would hope that the SSP would perhaps be able to glean enough data to try to actually pinpoint the usually unknown causes of single Schwannomas. And perhaps even supply information for future genetic testing which may help establish if there are any genetic abnormalities or mutations that would result in a person developing a single schwannoma - rather than Schwannomatosis.
6) I would hope that the SSP could possibly help determine if there are any environmental factors that help contribute to having a Schwannoma - which are as yet unknown.
I invite any knowledgeable medical practitioner or specialist to consider creating such a database. I feel certain that it would greatly help the medical establishment in future research, and ultimately future treatments for those with Schwannomas.
Anyone is free to take this idea and run with it. And myself, and many others at the SS and SF page will happily support any effort to make these tumors better understood.
- Neil
Coordinator of the SS and SF page
