TRials: The International Registry For Leigh Syndrome

TRiaLS: The International Registry for Leigh Syndrome is a highly-secure database that enables qualified researchers and clinicians real time access to support IRB approved research projects and clinical trials.

Participation in this highly-secure and information-protected registry is totally optional.  However, by participating in TRiaLS, you are giving the Leigh syndrome community a better chance at finding viable treatments and ultimately a cure. You can decline or opt out at any time.

PALS’ number one priority is to protect patient information. We have established protocols to determine who will receive approval to access patient health information.

A steering committee comprised of representatives from the United Mitochondrial Disease Foundation, UT Mitochondrial Center of Excellence, People Against Leigh Syndrome (PALS) and Mitochondrial Medicine Society work in tandem to vet and approve or deny information requests.

As much or as little as you want.  By joining TRiaLS you are saying, “I want to be informed of opportunities to support Leigh syndrome research efforts.”

TRiaLS is only for patients who have been diagnosed, either clinically or genetically, or are suspected of having Leigh syndrome. Leigh syndrome is categorized as one of the most clear cut mitochondrial diseases. Therefore, it is easier to focus on Leigh syndrome efforts because the patient population is so specific. Unlocking answers in Leigh syndrome could help unlock issues all mitochondrial disease patients face. 

There are no patient costs associated with this registry. Funding for this registry is supported by People Against Leigh Syndrome (PALS).

You may see any type of doctor you wish. This is simply a repository for information from patients with Leigh syndrome.

We encourage all patients with clinically or genetically confirmed or suspected Leigh syndrome to enroll in TRiaLS.  Also, please consider joining our mailing list to ask questions or receive additional information.