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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 see our first presented results please click HERE.

Registry Highlights

Each participant is assigned a Global Unique Identifier that enables de-identification of the data when shared with approved researchers to protect the patient's privacy. This means that your name and other identifying information will not be passed on.

 

The de-identified data will be shared only with researchers approved by Sanford's Scientific Advisory Board (SAB) together with Cure Mito Foundation.

The registry is protected by the Health Insurance Portability and Accountability Act (HIPAA) and compliant with the European Union General Data Protection Regulation (GDPR).

The participant owns his/her personal data and can withdraw the data from the registry at any time.

There is no cost to the participants.

Providing your consent to Cure Mito Foundation to have access to the data you provide will allow us to better understand Leigh Syndrome, help us understand where to drive our research initiatives, and let us know how patients need more support.

 

Enrollment Instructions- Let's get started!

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. 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 to the next set of questions.

Step 3 Submit

 

Once you have answered all the questions, click SUBMIT and you've completed the questionnaire! 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.

 

 

Thank you for taking the time to complete the questionnaire and for making an important contribution to leigh Disease research!

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