ECD Trials/Studies

There are ongoing ECD trials/studies that are currently accepting ECD patients.

Even if you or your loved one are not located near a trial/study center, you or the treating doctor are encouraged to talk to one of the researchers involved in a trial/study, prior to treatment. This will allow you to benefit from some of the leading research in the fast changing world of ECD treatments.

There are currently clinical trials open for ECD treatment. Some of these are for ECD patients who test positive for the BRAF V600 mutation. According to the early publications, the B-Raf enzyme inhibitors are showing good promise in helping ECD patients.

The advantages to a patient for entering a trial include:

  1. The drug is provided free of charge to the patient.  (In some cases, testing and travel may also be provided as part of the trial.  Patients should always ask what costs are included by the trial.)
  2. Follow-up appointments are very thorough and side effects are closely monitored and treated. (Where there are known side effects of a treatment, the trial protocols are set up to take immediate action should these be encountered.)
  3. Often times if a treatment is used off-label, outside of a trial, a patient will most likely be ineligible to enter trial for that treatment at a later date.

Advantages to the ECD community as a whole when a patient is entered into a trial include:

  1. Trials can lead to FDA approval for the treatment of ECD. With FDA approval, payers will be more likely to approve payment for the treatment.
  2. With a limited number of ECD patients, it is very important that data on the treatment be captured centrally to aid in the understanding of things such as: (a) how long should patients be kept on the treatment, (b) what, if any, indicators exist for possible treatment issues that might arise, etc.

The following lists more information about the open trials and studies accepting ECD patients.



Last updated: November 20, 2017

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