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What They Say?

Trials: the international registry for Leigh Syndrome 

What They Say?

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Frequently Asked Questions

What is 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.

Why should I participate?

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.

Who will have access to patient information?

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.

How much information do I have to give?

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.”

How is this different from The Mitochondrial Disease Community Registry?

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. It’s important to note, TRiaLS is linked to The Mitochondrial Disease Community Registry (MDCR). If the MDCR participant indicates that the diagnosis is Leigh syndrome, he/she will be redirected to TRiaLS.

I already completed The Mitochondrial Disease Community Registry; do I have to fill out TRiaLS too?

The Mitochondrial Disease Community Registry (MDCR) and TRiaLS will share patient information. Anyone who identifies themselves as having Leigh syndrome in the MDCR will automatically be included in TRiaLS.

It is PALS intent to also ask for additional medical records such as MRI scans or other test results in an effort to centralize medical records for researchers. This will significantly reduce the time associated for starting a clinical trial or completing a research program.

If you are participating in the MDCR, please be on the lookout for information from TRiaLS and respond as you feel most comfortable.

How much does this cost?

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

Do I have to see a certain doctor to participate?

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

My child does not have a confirmed diagnosis yet, but everyone is telling us it is Leigh syndrome. Can I still participate?

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.

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What They Say?

What they Say?

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JOHN SMITH
Co-Founder of Webflow

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JOHN SMITH
Co-Founder of Webflow

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JOHN SMITH
Co-Founder of Webflow