General
What is CoRDS?
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?
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?
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?
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?
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.
Participant
I’ve previously provided information to a researcher. Am I already enrolled with CoRDS?
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?
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?
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?
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?
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?
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?
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.
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.
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 cords@sanfordhealth.org.
Physician
Why should I encourage patients to join the CoRDS registry?
Disorders of the corpus callosum are considered rare diseases—they are known to affect a relatively small portion of the population. By enrolling in the CoRDS registry, patients and their families have an opportunity to participate in and direct future research regarding disorders of the corpus callosum.
The CoRDS registry will give researchers a more accurate assessment of the number of impacted individuals globally and provide a better understanding of what is important to patients and families. This can help guide the search for more impactful therapies and improved diagnostics. When clinical trials are available, CoRDS can identify participants who meet trial criteria and provide them with enrollment information if they are interested in participating.
In order to support these goals, we need as many patients and families as possible to be represented in the CoRDS data.
How are you safeguarding patient data?
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).
Researcher
How do I access the CoRDS database?
Researchers interested in accessing de-identifiable data in the CoRDS registry or who would like CoRDS to notify participants of clinical trials or studies can download and complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org.
Is there a cost to access the CoRDS database?
There is no cost to access the CoRDS database. Researchers interested in accessing de-identifiable data in the CoRDS registry or who would like CoRDS to notify participants of clinical trials or studies can download and complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org.
How do I contact CoRDS participants regarding a clinical trial?
Download and complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org with your request. CoRDS will contact registry participants on your behalf to notify them of the opportunity. Interested parties will then contact you directly for more information. CoRDS does not provide participant contact information to outside parties.
What types of information will I have access to?
Approved researchers and institutions will be provided de-identified information on CoRDS participants, as well as relevant supporting documents (such as diagnostics and x-rays) that were uploaded by participants.