PATIENT FORMS PERTAINING TO THE DATABASE

Database

    Three keys to progress in medicine are 1) understanding the pathophysiology and natural history of a disease process,  2) performing a rigorous and systematic review of previous attempts to treat this disease, successful or otherwise, and 3) testing a new hypothesis or treatment plan that is based on previous experience but that is designed to provide better results than ever before.  In order to make this happen, an appropriate database must be meticulously maintained that is why I will urge you to take time and fill out the following forms below.  The information that you provide will remain anonymous to everyone except myself and the nurse or data manager who will help me collect these data.  These forms are not a test of your abilities!  If you need any help (for example, if you are experiencing difficulty with speech or language or are physically unable to write), we will make certain you get the help you need.  It is appropriate for family or friends to help with these forms as well with the possible exception of the FACT-BR. 

 

Demographics Form- (PDF File)                                      Demographics Form (E-Form)  

This is a single sheet that asks for basic demographic information.  This will only be handed out at the initial appointment and information contained therein can be updated as necessary.

FACT-BR Quality of Life Scale (Version 3.0)- (PDF File)            FACT-BR Quality of Life Scale (E-Form)  

This only takes a few minutes.  The FACT-BR is comprised of a series of 53 questions where you are asked to rate your feelings on certain items including your concerns, relationships, sense of well-being, etc.  This instrument is a useful and validated method to study quality of life in persons with brain tumors.  Because certain sections ask sensitive information about your family and friends, it is preferable that we (either the nurse or I) help you complete this form if you are unable to do so alone.  Again, we will not divulge this information to your spouse or family otherwise.  However, if you wish to have the help of your spouse, that is ok too... but try to have the answers reflect how you really feel!  This form will be distributed every three months.  

Permission to Archive and Study Tissues (PDF File)   Permission to Archive and Study Tissues (E-Form)

  Because of the genetic profiles of primary brain tumors are only now beginning to be understood, it is of primary importance to be proactive about tissue collection (i.e. blood, surgical tumor specimens, and cerebrospinal fluid).  Although not presently the case for brain tumors, genetic information from your specific tumor may be able to convey information regarding chemosensitivity, prognosis, and other important data in the near future.  At the very least, analysis of these tissues will provide important information that will push forward our ability to conquer neurological cancer further than ever before. 

Treatment Update/Response Measurement (PDF File) 

Treatment Update/Response Measurements (E-Form)

 

 

 

 

 

 

 

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