patient registry

Leigh Syndrome global patient registry

Help us bring patients, families, and researchers together to gain a better understanding of Leigh Syndrome. If you or a family member has been diagnosed anywhere in the world with Leigh Syndrome, please enroll in the patient registry to make an important contribution to Leigh Syndrome research. 

 

The Cure Mito Foundation is partnering with Sanford CoRDS to create the registry. Sanford CoRDS supports and enables rare disease communities to build robust registries, providing researchers with the information they need to drive research forward. 

For more information about the registry please read IRB-approved Frequently Asked Questions.

To download IRB-approved flyer to share with patients and clinicians, please CLICK HERE.

Enrollment Instructions

If you would like to enroll and complete the CoRDS 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. You may also complete registration on paper by calling CoRDS at

+ 1 877 658 9192 or sending an email to cords@sanfordhealth.org and requesting a paper version of the CoRDS Patient Registry Questionnaire.

Step 1

Set Up A CoRDS Profile by clicking here: Activation Form (sanfordresearch.org)

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

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 2

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 3

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.

If you have more than one family member with Leigh Syndrome - please enroll each participant separately. Your family's participant accounts can later be linked by clicking "Family Branching" in the participant portal.

Surveys are available in Spanish and Portuguese. All translations are certified and IRB-approved. Please reach out to us at info@curemito.org if you need translated surveys. If you're interested in other languages please reach out to us as well.
 

Registry news
and timeline

  • Poster "Building a Worldwide Community - Leigh Syndrome Global Patient Registry" will be presented at the 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit on October 17-18, 2022.

  • Poster with our patient results will be presented at mitoNice conference in Nice, France, in September 2022

  • Poster with the results of our collaboration on alignment and interoperability of Leigh Syndrome Patient Registry Data with Regulatory Submission Standards will be presented at PHUSE/FDA Computational Science Symposium in September 2022.  After this, results will be shared with the entire community. The press release about this project can be found here: https://www.curemito.org/cdisc

  • Our registry has been listed on Orphanet, with other international registries and biobanks - June, 2022

  • Poster has been presented at UMDF symposium - June 2022

  • Leigh Syndrome Global Patient Registry opened - September 2021

Registry flyer - please click to see it in full size

leigh syndrome patient registry.jpg

short video about cords