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Patients Against Lymphoma

 

Support Patient-to-Patient > Clinical Trial Survey

... for lymphoma patients who HAVE considered at least one clinical trial

Last update: 10/15/2010

If you have NOT yet considered a trial, 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 patients who have considered a clinical trial.
(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)
      Go to Next Question group
     
    c) Time since my diagnosis:  (approximate)
     
     d) The current grade* of the lymphoma (choose one):  
        unknown
        aggressive/intermediate (high grade)
        indolent or low grade (slow growing)
        indolent, transformed to aggressive 
     * Grade refers to the expected growth rate of the lymphoma.  
     

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    e) Cell type* of the lymphoma (choose one)
       unknown   
       CLL/SLL      
       Diffuse Large B-Cell      
       Follicular (center cell)
       MALT* or Marginal Zone  (MALT stands for mucosa-associated lymphoid tissue)
       Mantle Cell
       Waldenstrom's 
       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.
 

e) 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 This information will not be published, however.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.)
 

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  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 do not mean complementary medicine - practices such as yoga, meditation, dietary practices that may improve general health and quality of life)  
     

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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
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  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)
     

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Clinical trials:
  1.  a) Rank your interest level* in participating in clinical trials:
          (Not sure | Low interest | Some 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. (If you selected No interest, you may be completing the wrong part of the survey ...  If you have NOT yet considered a trial, click here)
b) Select the number of clinical trials you have participated in:
       (0 - 3 or more)

c) I am currently enrolled in a clinical trial: 
    Yes  OR  No
 
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  1. a) Please check the different ways you have learned about clinical trials:
          (Select at least one, and all that may apply) 
     
           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 learn about clinical trials is: 
     
           
         ( My oncologist | Outside lymphoma expert | Internet | Lymphomation.org | 
           Drug sponsors presentation or ad | online support groups | Other)

     

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  1. Please rank the significance of the factors that have influenced your willingness or ability to
    participate in clinical trials:
     
     a) Concerns that you will not meet eligibility requirements* for clinical trials
      
         
         (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)

         * Examples of eligibility requirements:  low blood counts, bulky disease, performance status, etc.  
     
      b) Concerns about risks, such as unknown toxicities of new drugs for which there is 
          less clinical experience than for standard therapies. 
          
     
          (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)

     Go to Next Question group

     
    c) You feel that most clinical trial protocols do NOT compare favorably with regular treatment. 
          
     
         (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)
     

      d) Concerns about frequent or undesirable tests and procedures in clinical trials
          

          (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)

      e) Indicate the tests or procedures that have influenced your decision
          NOT to participate in a clinical trial:
          (check all that may apply)
           bone marrow biopsy   frequent CT scans,  
           lymph node biopsy    frequent blood tests.  
     
      
    Go to Next Question group
     
     f) The test or procedure of greatest concern to me is: 
        
     
    g) Concerns about difficulties in arranging or paying for lodging or travel  
       
     
        (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)
     
     h) Concerns that insurance may not cover related costs  
         

         (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)
     
     
     Go to Next Question group

     i) Concerns about randomized* clinical trials  -  the chance of being 
          in an inferior or undesirable arm of the study
          

          (Not sure | Minimal factor | Modest factor | Significant factor | Not a factor)
 * Randomized studies typically divide participants into two treatment arms to allow for  comparing the outcomes; one arm receiving the investigational agent, the other receiving the standard of care. 
 j)  Other factor that has influenced your willingness to participate in 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. 
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