About Lymphoma | Advocacy | Art | CAM | Clinical trials | Doctors - Experts - Centers | Guidelines at Diagnosis | News
Risk Factors | Side Effects | Statistics | Support | Symptoms | Tests | Treatments | Types of Lymphoma

Search Site         Guidelines at Diagnosis | About Clinical Trials            How to Help!

Patients Against Lymphoma

 

Support Patient-to-Patient > Clinical Trial Survey

... for patients who have NOT yet considered clinical trials

Last update: 10/15/2010

If you have considered one or more clinical trials,
do not complete this survey. Click here instead.

After you complete the survey you will see a list of what you selected. 
When you return to this form, you are done.


Basic information for lymphoma patients who have NOT considered a clinical trial.
(This survey can be completed by a survivor or caregiver) 
  1. a) Gender of person diagnosed:    CAUTION wheel mouse users: 
                                                                               when a survey menu is active, rolling the wheel to  
                                                                               scroll the page will change the menu option instead.
b) Age at diagnosis:    (approximate)
 
c) Time since my diagnosis:  (approximate)
 
d) The current grade * of the lymphoma (choose one):  
     unknown
     aggressive/intermediate (high grade)
     indolent or slow growing (low grade)
     indolent, transformed to aggressive
   * Grade refers to the expected growth rate of the lymphoma.  
 
   Go to Next Question group
 
e) Cell type* of the lymphoma (choose one)
   unknown   
   CLL/SLL      
   Diffuse Large B-cell  
   Follicular (b-cell) sometimes called Center Cell
   MALT or Marginal Zone  (b-cell)   (MALT stands for mucosa-associated lymphoid tissue)
   Mantle Cell (b-cell)
   Waldenstrom's (b-cell)
   T-cell (any type)
   Hodgkins   
   Other  (Other, specified)
    * The cell type of the lymphoma is described on the pathology report.  Treatment approach
      can vary significantly based on cell type.  If you are not sure, choose Unknown.
f) Your email* address
   * Required so we can check for duplicate entries. This information will not be published, however.  When duplicates emails are found, we will retain only the last survey for the email)
Go to Next Question group
  1. Please indicate your current clinical status: 
    (check ALL that may apply)
    I have never been treated
    I am in remission following treatment (no detected evidence of disease)
    I am receiving treatment 
    I have had only one treatment course* for lymphoma
    I have detected disease but am being monitored (watchful waiting)
    I have active disease and I'm receiving treatment, or will need treatment soon
* A treatment course could be a single agent, combination or sequential therapy. It could include maintenance therapy, such as Rituxan given after chemotherapy on a regular basis.
  1. Please rank your expectation in the potential of alternative medicine* to treat lymphoma.

     (Not sure | Low | Modest | High)
     * Alternative medicine - non-mainstream substitutes for treatment that have not been proven
    safe and effective in clinical trials.   (By Alternative, we e do not mean complementary medicine - practices such as yoga, meditation,  and dietary  practices that may improve general health and quality of life.)  
    Go to Next Question group


Oncologists and Second Opinions:
  1. I have had my biopsy slides reviewed a second time by 
    an independent pathologist 
    (Not sure | Yes | No)
  2. a) I have had a second opinion by a lymphoma specialist
      (Not sure | Yes | No)
     * A specialist treats only patients with similar types of cancers, such as lymphoma or blood cancers)
     

    b) The specialist I consulted for a second opinion discussed clinical trials 
        as a possible treatment for me.
           Yes   
           No 
           I never consulted a lymphoma specialist for a second opinion
Go to Next Question group
  1. a) My regular oncologist is a lymphoma specialist
     
           ( Not sure | Yes | No)

            * A specialist treats only patients with similar types of cancers, such as lymphoma or blood cancers.
     

    b) 
    My regular oncologist is an investigator
     
         (Not sure | Yes | No)
       
       * An investigator conducts clinical trials as part of his or her practice.
     


    c)  My regular oncologist has discussed clinical trials as a possible treatment for me
     
         
    (Not sure | Yes | No)

    Go to Next Question group



Clinical trials:
  1.  Rank your interest level* in participating in clinical trials:
          (Not sure | Low interest | Modest interest | High interest | No interest)
 * By "interest level" we mean an expectation that clinical trials may provide access to therapies that can be superior to approved therapies and provide clinical benefit.
 
Go to Next Question group
  1. a) Please check the different ways you may have learned about clinical trials:
          (Select all that may apply) 
           I have never learned about a clinical trial 

          If above option is blank, please check at least one of the following:
           My oncologist 
           An outside lymphoma expert I consulted
           Internet?  
          ... Lymphomation.org website
           Drug sponsors presentation or advertisement 
           Online support groups (patient to patient)
           Other  ...  optional text:

    b) The most common way I have learned about clinical trials is: 
     
           
         (I have never learned about trials | My oncologist | Outside lymphoma expert | 
          Internet | Lymphomation.org | Drug sponsors presentation or ad | online support groups | Other)

     

    Go to Next Question group
  1.  a) Please select the reasons you have not YET considered clinical trials.
      (Check all that may apply)
       My lymphoma has been stable without treatment.
       I'm in remission*
       I'm in treatment or have recently completed treatment
       I have greater confidence in standard therapies* to be effective
       I'm concerned about risks - studies are not as safe as standard medicines*
       My regular oncologist has not mentioned studies.
       I'm confused about which study is most appropriate
       I have concerns about excessive tests and procedures*
       I expect I would not be eligible*
       I expect insurance would not cover expenses
       I feel that alternative* and complementary practices can control the disease
      * Standard medicines are protocols that have been tested and approved. 
      * Tests and procedures - such as biopsies, blood tests, ct scans
      * Remission - no symptoms, and no evidence of disease by imaging
      
* Stable - not progressing or causing symptoms.
      * Eligible - requirements for participation, such as normal blood counts
  
    * Alternative medicine - non-mainstream substitutes for treatment that have not been proven safe and effective in clinical trials. 
b) Please select the most important reason (listed above) for not yet considering clinical trials:
    
 
c) Other
reason you have not yet considered a clinical trial?
       (optional text)

 Click Submit to complete the surveyThank you for participating!

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright 2004,  All Rights Reserved.