Studies & Trials

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.  The advantages to a patient for entering a trial include:

  1. Treatment, or portions of the treatment, might be 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 in the trial.)
  2. Follow-up appointments are very thorough and side effects are closely monitored and treated. (Where there are known side effects of treatment, the trial protocols are set up to take immediate action should these be encountered.)
  3. Often times if a patient begins treatment outside of a trial using a particular drug, the patient may be ineligible to enter a trial for that particular treatment at a later date. For this reason, it is often advantageous to ask about trials before beginning treatment. However, any patient interested in entering a trial is encouraged to ask whether they are eligible, at any time, no matter their circumstances.

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

  1. Trials can lead to FDA/governmental approval for the treatment of ECD. With government 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 effective is the treatment and under what circumstances, (b) how long should patients be kept on the treatment, (c) what, if any, indicators exist for possible treatment issues that might arise, etc.

Use the search tools to find a specific study or trial near you. 




Last updated: May 17, 2024

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