Patient Registry

CureARS MAPS Registry

If you or a family member has been diagnosed anywhere in the world with one of the 19 mtARS genes, please enroll in the patient registry to make an important contribution to mtARS Research.

The CureARS team has developed a patient registry in partnership with the National Organization for Rare Disorders (NORD). The registry is a series of surveys that ask about the quality of life, medical history, and development of people diagnosed with the mtARS genes. It is important that all families contribute to the registry as it is an invaluable tool to help us further our understanding of the mtARS genes and advance research so we can move toward identifying treatments, improving medical care, and formulating educational, social, and daily living supports.

This secure, anonymized database helps clinicians and scientists fully understand the mtARS genes and identify opportunities for research.

Restorative Yoga

Restorative yoga focuses on holding passive poses for extended periods, promoting relaxation and reducing stress by engaging the parasympathetic nervous system.
Duration: 45 minutes

Enrollment Instructions

If you would like to enroll and complete the CureARS MAPS Patient Registry Questionnaire online, you may do so by following the instructions below. The registry works best with updated versions of Google Chrome, Mozilla Firefox or Microsoft Edge and may not work as well with a phone or tablet.

Step 1

Set Up A NORD Profile by clicking HERE.

Complete the CoRDS activation form. Under disease name please select “Leigh Syndrome”. Please use a desktop/laptop computer or tablet.

Step 2 - Login Setup

The system will generate a username for you based on your name. You will need to create a password and setup a security question. Once completed, click the LOGIN button to login to your CoRDS Patient Registry Profile.

Step 3

Complete CoRDS Standard and Disease-specific Questionnaire

In the Patient Registry Profile, click the CONTINUE ENROLLMENT button near the top of the screen. Click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed.

Step 4

Once you have answered all the questions, click SUBMIT! Remember, you can always login to update your answers at any time. You should plan to update your questionnaire at least every year and after any significant changes to health.