CoRDS Registry

Coordination of Rare Diseases at Sanford (CoRDS) is a research database for rare diseases/conditions, carriers, and the undiagnosed and the NODCC has partnered with them to help enhance their misson.

When it comes to rare diseases, patients and family members are often the experts. The CoRDS registry provides researchers with a fuller understanding of the experiences and concerns of families with disorders of the corpus callosum.

Individuals & Families Researchers

Individuals & Families

As part of our mission to enhance quality of life and promote opportunities for individuals with disorders of the corpus callosum, NODCC supports scientific research that helps the medical community better understand behavioral syndromes and develop timely intervention strategies.

NODCC is partnering with Coordination of Rare Diseases at Sanford (CoRDS) to create a patient registry of individuals with disorders of the corpus callosum. The free, patient-led registry will enable researchers to collect and analyze data, enroll patients in clinical trials, and help direct future research.

The CoRDS platform is a secure place for patients and families to share information, symptoms, development, and medical histories.

Why participate in the registry?

By joining the registry, you can be help direct the future of study regarding disorders of the corpus callosum, including the development of new treatments and therapeutic approaches.

Help researchers have a more accurate account of the number of impacted individuals
Give researchers a better understanding of what is important to individuals and caregivers
Identify gaps in research and resources to better meet the needs of families
Guide the search for more impactful therapies and improved diagnostics

How to Enroll

Enrolling in the database is free and you can edit or remove your information at any time, should you choose to do so.

Get Started

There are two initial surveys, which each take 10-20 minutes to complete. You can pause, save, and return to the survey, if needed.

The general CoRDS survey covers enrollment permissions, contact information, and general socio-demographic information.
The NODCC-specific survey covers medical, therapeutic, and educational histories of the individual. There is also an option to upload a genetic report or MRI report, if you would like to do so.

Having trouble with registration?

Please contact CoRDS at (877) 658-9192 during business hours, 8:00am-4:30pm (CST) Monday through Friday. If you need assistance after business hours, please leave a message or email [email protected].

Frequently Asked Questions

General FAQs

What is CoRDS?

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Coordination of Rare Diseases at Sanford (CoRDS) is a global patient registry for rare diseases/conditions, carriers, and the undiagnosed—it ties together patients, advocacy groups, and researchers. Unlike many other registries, CoRDS is made available at no cost to patients, advocacy groups, and researchers.

Of the 7,000 rare diseases known worldwide, 3,078 are represented in CoRDS. More than 20,000 participants have contributed their data, representing all 50 U.S. states and 95 countries.

Who is Sanford Research?

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Sanford Research is a nonprofit biomedical research institute based in the Midwest. It sponsors and manages CoRDS, a centralized international patient registry for rare diseases.

What is the purpose of the NODCC registry?

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NODCC’s mission is to enhance quality of life and promote opportunities for individuals with disorders of the corpus callosum. As part of that mission, NODCC supports scientific research that helps the medical community better understand behavioral syndromes and develop timely intervention strategies. Participation in the patient-led CoRDS registry will help researchers collect and analyze data, enroll patients in clinical trials, and help direct future research regarding disorders of the corpus callosum.

Additionally, the CoRDS registry data will help NODCC develop educational materials, apply for grants, and identify new ways to support our NODCC families.

How will personal information be kept confidential?

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The privacy of registry participants is important to us. Names and other personal identifiers will be removed from the data and replaced with a unique code number before data is shared. Researchers will be able to see all information related to each individual but will not be able to determine who that individual is.

Additionally, as a global resource, CoRDS complies will all relevant data protection regulations, including General Data Protection Regulations (GDPR).

Is this a U.S. program or a global one?

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CoRDS is a global registry with participants in more than 95 countries. The survey for disorders of the corpus callosum was developed in English but will eventually be available in translation for other languages.

Patient FAQs

I’ve previously provided information to a researcher. Am I already enrolled with CoRDS?

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The CoRDS registry requires participants to sign up directly. Other parties cannot enroll you since you must provide consent for your data to be shared. If you have previously participated in a research study or worked directly with researchers, please consider enrolling in the CoRDS registry, which will serve as a collective resource globally.

I am a supporting member of NODCC. Are you providing my information to CoRDS?

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The CoRDS registry requires participants to sign up directly. Other parties cannot enroll you since you must provide consent for your data to be shared.
NODCC helped develop the survey that participants complete and will receive de-identified data that will help us develop future educational materials, apply for grants, and identify new ways to support our NODCC families.

What does it cost to join the registry?

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There is no cost to participate for either patients and families or researchers. Your only investment is the time it takes to complete the surveys and update your information, when needed.

Who has access to my data?

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De-identified data will be available to NODCC and approved researchers. In order to access de-identified data, researchers must complete an access request form that identifies the lead researcher, their institution, and a description of their proposed study. CoRDS will review and approve requests on an individual basis.

Groups that are recruiting for clinical trials will not have access to the CoRDS database. To preserve the privacy of CoRDS participants, CoRDS will notify participants who meet clinical trial criteria and provide them with enrollment information, should they choose to participate. Registering with CoRDS does not mean you are required to participate in clinical trials, it simply makes you aware of opportunities.

How long will my data be stored?

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There is no set time limit on the CoRDS registry, so data will be stored indefinitely. If, in the future, you wish to remove your data from the registry, there is an option to do so.

I am a resident of the European Union. Is CoRDS GDPR-compliant?

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As a global resource, CoRDS complies will all relevant data protection regulations, including General Data Protection Regulations (GDPR).

If I choose to participate now, can I opt out later?

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Yes, you have the ability to leave the CoRDS registry at any time. Patients/family members who contribute their data to CoRDS own and manage their data, including who has access to it and how it’s shared.

I don’t remember my password.

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On the login screen, click the Forgot Password link. You will receive an email with instructions on how to reset your password.

I am having technical issues with the portal or receiving error messages during the survey.

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Researchers

The National Organization for Disorders of the Corpus Callosum (NODCC) has partnered with Coordination of Rare Diseases at Sanford (CoRDS) to create a patient registry of individuals with disorders of the corpus callosum.

It is NODCC’s hope that the registry will strengthen ties between the patient and research communities, to enable researchers to:

Have a more accurate account of the number of impacted individuals
Better understand of what is important to individuals and caregivers
Identify gaps in research and resources to better meet the needs of families
Guide the search for more impactful therapies and improved diagnostics

How to Access the Patient Data

The CoRDS registry makes de-identified patient data available to researchers at no cost, in order to help the medical community better understand behavioral syndromes and develop timely intervention strategies.

In order to access de-identified data, researchers must complete an access request form that identifies the lead researcher, their institution, and a description of their proposed study. CoRDS will review and approve requests on an individual basis. Completed forms should be returned to [email protected].

Once approved, researchers and institutions will be provided de-identified information on CoRDS participants, as well as relevant supporting documents (such as diagnostics and imaging) that were uploaded by participants.

How to Recruit for Clinical Trials

Groups that are recruiting for clinical trials can work with CoRDS to identify individuals who meet enrollment criteria. Download and complete the CoRDS Researcher Access Request Form and return it to [email protected]

To preserve the privacy of CoRDS participants, CoRDS will notify potential participants of the trial opportunity and provide them with enrollment information, should they choose to participate. CoRDS does not provide patient contact information to outside parties.

Questions?

You can find answers to Frequently Asked Questions above.

If you are having technical issues with the CoRDS website, you can contact CoRDS at (877) 658-9192 during business hours, 8:00am-4:30pm (CT) Monday through Friday, or by email at [email protected].