Many readers of Mitochondrial Disease News have reached out and urged us to do more to bring additional awareness about clinical trials applicable to the patient community. In response, we have created a new Clinical Trial Notification Program that helps us match individuals directly to relevant clinical trials based off of their profile information. For participants in our clinical trial notification program, we may reach out directly to inform you of a clinical trial that may be specifically relevant to you.

Communication between Mitochondrial Disease News and program participants is strictly confidential and subject to our Privacy Policy. We do not share your personal information with third parties except when you have expressly provided us permission to do so and requested that we share such information on your behalf. We will not use, sell, or assign your email address for any purpose other than to communicate with you about clinical trial services.

If you are interested in participating in our Clinical Trial Notification Program, please click the button below and complete a short questionnaire. If we identify a trial that your profile is a match for, we will communicate with you via email informing you of the opportunity and will provide information on the sponsor company and trial protocol. With your consent, we will then forward your information to a clinical trial study site in your area for review.

 

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8 comments

  1. Judith Keller (Annie) says:

    I am 67 and was diagnosed with Mitochondrial Myopathy, CPEO through a biopsy done in 2010, and I saw Dr. Michio Hirano, Columbia University, Dept. of Neurology. N.Y. in January of 2011. He believed at the time that my mito was due to a fluke not due to hereditary inheritance. The main problem is a total lack of energy, and pain in my legs. I try to exercise on a treadmill as much as possible. I also have CPEO which has affected my ability to have peripheral vision. I had finished a JD degree in California in 1998, so I had plans for a second career which has been majorly impacted by this condition. I feel that I am not ready to just throw in the towel, so I am really counting on the researchers coming up with some viable answers so I can get on with my life. If I can help in any way I am willing to do so.

  2. G Monty Weathers says:

    I’m a 65 year old man who has been diagnosed with Mito since I was 50 years old. I have two sisters who also have severe cases of the disease. I have been in the hospital several times, the most recent was Achalasia when I had an esophojectomy, with my esophagus removed and the stomach brought up and made into an esophagus and many other challenges.

  3. Barbara Rojas says:

    My niece has been diagnosed with MERRF. She seems to be getting progressively worse as she gets older. Very much interested in a clinical trial for her. Thank you.

  4. Susan Melton says:

    My husband has been diagnosed in 2008 with MERRF by DNA testing. His brother had MERRF also but passed at an early age. My husband has shown significant decline since this last fall. Very interested in staying connected to anything new.

  5. Teresa Jackson says:

    Thank you for the clinical trials and hopefully we can improve the lives of those affected. My son is now 32, has KKS and CPEO. We are searching for answers and help for a better quality of life. He has a muscle weakness, poor vision and hearing. Muscle pain, heart issues. Please let us know of news or trials or Doctors we can see. Thank you!

  6. Linda says:

    My niece who is 22 was recently diagnosed with MEERF. She has constant leg pains and tires very easily. Our family is desperately looking for a clinical trial for her.. Praying you can help . Thank you.

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