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FAQ

  • What is the Leigh Syndrome Patient Registry (LSPR)?
    • The Leigh Syndrome Patient Registry (LSPR) is a highly secure database which will enable 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. By participating in this registry 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.
    • We are asking Leigh syndrome patients and caregivers to participate in the LSPR to enable qualified researchers and clinician’s access to medical and health history of Leigh syndrome patients.
  • Who will have access to the patient’s information?
    • PALS number one priority in this project is patient information protection. We have set up protocols to determine who will receive approval to access patient health information.
    • A committee comprised of representatives from the United Mitochondrial Disease Foundation, the UT Mitochondrial Center of Excellence, Leigh syndrome clinic, People Against Leigh Syndrome and Mitochondrial Medicine Society.
  • How much information do I have to give?
    • As much or as little as you want. My joining the registry 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?
    • The Leigh Syndrome Patient Registry 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 will help unlock issues all mitochondrial disease patients face.
  • I already completed the Mitochondrial Disease Community Registry, do I have to fill out the Leigh Syndrome Patient Registry as well?
    • The Mitochondrial Disease Community Registry and the Leigh Syndrome Patient Registry will share patient information. Anyone who identified themselves as having Leigh syndrome in the MDCR will automatically be included in the LSPR.
    • Please note, that 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 LSPR 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 Leigh syndrome. Can I still participate?
    • You may consider waiting for confirmation. Meanwhile, you can always join our mailing list to receive additional information.