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Ed Forum 2016

IWMF Clinical Trial Policy

Principles

The following principles guide the IWMF’s Clinical Trial Policy:

  • The IWMF believes that clinical trials are fundamental to contributing to better treatments and to the end goal of a cure for WM.
  • The IWMF believes that the current regulatory environment and scientific policies ensure that all clinical trials are properly vetted.
  • The IWMF does not favor any particular clinical trial, drug, pharmaceutical company, biotechnology company, clinical trial recruiting company, clinical trial site, or any other entity over another. The IWMF does not, therefore, explicitly or implicitly endorse any particular clinical trial.
  • The IWMF believes that WM patients should be aware of clinical trial options as they decide upon the appropriate course of treatment with their physicians. Whether or not a WM patient participates in a clinical trial is, like all other treatment decisions, a personal decision that a patient should make with his or her physician.

IWMF Clinical Trial Policy

As the IWMF becomes aware of clinical trials, the IWMF will use appropriate communication means at its disposal to ensure that WM patients are aware of current clinical trial options. These communications may occur in any or all of the following ways:

  • Maintenance on the IWMF website of links to current governmental lists of clinical trials.
  • Communication in the Torch, particularly in the Medical News Roundup column.
  • On IWMF-Talk.
  • Via the clinical trial contact on the IWMF Lifeline.
  • As part of scientific progress updates to local Support Groups.

By any and all of these means, the IWMF will take care to underscore the following:

  • Participation in a clinical trial is an individual decision for each patient in consultation with his or her physician.
  • The IWMF does not explicitly or implicitly endorse any particular trial.
  • The IWMF provides clinical trial information as a service to members to use as they see fit.
  • The IWMF does not provide access to its member lists under any circumstances to any company involved in clinical trials. Instead, as appropriate, the IWMF notifies its members directly through communications of its choosing.
  • The IWMF does not allow companies or researchers involved in clinical trials to attend IWMF Support Group meetings to provide updates and/or encourage participation in a particular clinical trial. Discussion about all WM clinical trials is allowed.

Effective 8/08/14

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