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• What is CoRDS?
• How does CoRDS work?
• How does CoRDS help rare disease research?
• Why would someone want to enroll?
• What if a participant has already enrolled in a different registry for their rare disorder?
• What information does CoRDS collect?
• How does CoRDS collect information?
• How does CoRDS protect participant information?
• Who can have access to CoRDS?
• Who is eligible to enroll in CoRDS?
• Are adults eligible to enroll in CoRDS?
• Is there a cost to enroll?
• How does an individual enroll in CoRDS?
• After enrolling, how will participants be contacted?
• What will CoRDS ask of participants?
• What does “research” mean? What might researchers request from participants?
• Why hasn’t a participant been contacted for research yet?
• A participant can’t log into the database. What should he or she do?
• How does a participant withdraw from CoRDS?
• What if a participant forgets their username and password?
• What else is CoRDS up to?
• Where can visitors learn more about rare diseases?
• Can participants share information about CoRDS?
• Contact CoRDS
1. What is CoRDS?
The Coordination of Rare Diseases at Sanford (CoRDS) is a free patient registry for any and all rare diseases. It was developed because access to information and resources about rare diseases presents a challenge to researchers, physicians, patients and their families. By helping individuals with rare and uncommon disorders connect with the researchers who study those disorders, CoRDS can accelerate research and keep families aware of opportunities to participate in research studies or clinical trials. The purpose of the CoRDS registry is to facilitate research on rare diseases by providing a resource through which researchers can screen for prospective study participants. In this way, researchers, physicians and patients work together to advance research.
2. How does CoRDS work?
CoRDS provides a secure way for participants to make their basic medical history known to researchers without compromising their privacy. Individuals who have a diagnosis of a rare disease, an uncommon disease of unknown prevalence, or who are searching for a diagnosis are invited to enroll in CoRDS by filling out the CoRDS Registry Form and then completing the CoRDS Informed Consent Form and Questionnaire. Rare disease researchers from around the world can apply to access the “de-identified” information collected on the questionnaire. This means that participants’ names and contact information remain private, and are only available to CoRDS personnel here at Sanford Research. CoRDS will contact participants on behalf of the researchers to share relevant research opportunities. It is always up to the participant to decide whether or not to participate in any research studies or clinical trials. Participants can also consent to share information with certain Patient Advocacy Groups (PAGs) and/or existing registries- see more in “Who can have access to CoRDS?”
3. How does CoRDS help rare disease research?
There are approximately 7,000 rare diseases affecting 25 million Americans and 350 million people worldwide. Research into rare diseases is challenging due to a lack of information. CoRDS was established as a resource to bring rare disease patients and researchers together to accelerate research into these orphan diseases.
4. Why would someone want to enroll?
The CoRDS registry
- Provides individuals an opportunity to be informed of research studies and clinical trials for which they may be eligible
- Provides researchers with a central resource for the identification and more rapid recruitment of potential research participants
- Has the potential accelerate research into rare diseases
- Is of no cost to enroll and does not take long!
5. What if an individual has already enrolled in a different registry for their rare disorder?
They can still enroll. CoRDS offers a unique opportunity for individuals affected by rare disorders.
- CoRDS collects information on all rare diseases, and has the ability to collate information based on a disease characteristic or symptom. This helps researchers understand the cause rare diseases and develop treatments.
- The CoRDS Questionnaire is brief and asks simple questions about contact information, diagnosis, test results, and interest in research participation.
- CoRDS personnel will notify participants of research opportunities related to rare disease research.
- Participants update participant information annually to maintain accurate data.
6. What information does CoRDS collect?
CoRDS collects information about participants through the CoRDS Questionnaire. The questionnaire requests basic contact, demographic, and clinical information and asks if participants have an interest in participating in future research studies. It was designed to be relevant to all rare diseases, as outlined in the NIH Office of Rare Disease Research (ORDR) Common Data Elements.
7. How does CoRDS collect information?
CoRDS collects participant information through the CoRDS Questionnaire completed during enrollment. CoRDS provides three convenient enrollment options:
- Online: Sanford Research has developed a secure online portal for participants who prefer to enroll online. To request online enrollment, complete the CoRDS Registry Screening Form and provide an email address. CoRDS personnel will send a unique username and password that can be used to login to the secure online enrollment portal to enroll.
- Mail: Those who prefer to enroll via postal mail can do so by indicating their preference on the CoRDS Registry Form. Please be sure to provide an accurate mailing address and phone number, as CoRDS personnel will send the enrollment documents to the address listed.
- In-Person: Participants who can visit Sanford Health’s main medical campus in Sioux Falls, South Dakota can request to meet with CoRDS personnel and complete enrollment in-person. Just send an email to CoRDS@sanfordhealth.org or call 605-312-6426 to schedule an enrollment visit.
8. How does CoRDS protect participant information?
Participant privacy and security is very important to CoRDS. The CoRDS registry follows strict guidelines to assure participant information is protected. Federal and state laws also protect participant privacy. All confidential electronic information will be stored in the secure Velos eResearch Clinical Research Management System. Any confidential hard copy information (paper consent forms, questionnaires) will be stored in secure, fireproof cabinets. Every possible effort will be made to maintain confidentiality. In the unlikely event that there is a breach in the database, participants will be notified.
9. Who can have access to CoRDS?
CoRDS offers participants three distinct options for sharing information. During enrollment, each individual is asked in which of the following opportunities they would like to participate:
- Researchers: The information in CoRDS will be made available to researchers studying rare, uncommon, or undiagnosed disorders if they have obtained approval for their research project from (1) the Institutional Review Board (IRB) at the researcher’s institution and (2) the CoRDS Scientific Advisory Board led by Dr. David A. Pearce.
An IRB is a group of scientists and laypersons from the community (i.e.: lawyers, clergy, professors) who review proposed research using human subjects. The IRB will review the research to ensure that CoRDS participants’ rights are upheld.
- Other Patient Registries: A subset of de-identified information collected from each profile can be shared with certain other databases. CoRDS shares data with other databases in order to help improve understanding of rare diseases, to avoid the duplication of efforts, and to collaborate with existing research efforts and organizations dedicated to rare diseases.
- Patient Advocacy Groups: Patient advocacy groups (PAGs) representing individuals with rare or uncommon diseases who have partnered with CoRDS may also request access to information in CoRDS that may or may not include participants’ names. The PAG will sign an agreement stating that they will not use the information for research purposes. If a participant indicates that they would like their information shared this way, Dr. David A. Pearce and CoRDS personnel will not be held responsible for the use of information by the PAG.
10. Who is eligible to enroll in CoRDS?
Any individual with a rare diagnosis, a diagnosis of an uncommon disease with unknown prevalence, or who is searching for a diagnosis is eligible to enroll in CoRDS. A Parent or Legally Authorized Representative (LAR) may enroll affected minors or dependent adults on the participant’s behalf.
Unfortunately, as of April 2013, CoRDS can only enroll individuals who are fluent in English. CoRDS plans to include different languages in the future, so stay tuned for updates on language capabilities!
11. Are adults eligible to enroll in CoRDS?
Yes, adults with a rare diagnosis, a diagnosis of an uncommon disease with unknown prevalence, or who is searching for a diagnosis are eligible to enroll in CoRDS.
12. Is there a cost to enroll?
No – it is completely free to participate in CoRDS. In addition, CoRDS ensures that it is free for researchers to access the registry, and free for patient advocacy groups to partner with CoRDS. The registry is funded through the Sanford Children’s Health Research Center and through a Sanford Health Foundation grant.
13. How does an individual enroll in CoRDS?
There are three simple steps to enroll in the CoRDS Registry.
- Screening: Individuals can begin the enrollment process by completing the CoRDS Registry Form. This step, called “Screening,” allows CoRDS personnel to review the individual’s eligibility and preferred enrollment method (see How does CoRDS collect information? to learn more about the different options).
- Consent: CoRDS personnel will contact the individual to complete enrollment via the preferred method indicated on the CoRDS Registry Form. Each individual will be given a copy of the CoRDS Informed Consent Form, and will be asked to read and sign the document to provide consent to participate in CoRDS.
- Questionnaire: CoRDS will then ask the participant to complete the CoRDS Questionnaire, to be stored in the CoRDS Registry.
14. After enrolling, how will participants be contacted?
After completing enrollment, participants will be contacted by CoRDS when:
- An approved researcher would like to share information about a study or trial for which the participant is eligible. CoRDS personnel will contact those individuals on behalf of the researcher and provide them with the information on the study and the contact information for the researcher. At that time, the CoRDS participant is able to decide whether or not they would like to participate in the clinical trial or research study. If interested in participating, the individual will be provided with the contact information necessary to connect with the researcher.
- A year has passed. CoRDS requests that all participants update their information annually.
15. What does CoRDS request of participants?
CoRDS asks only that participants complete the three steps of enrollment, and then update their information once per year. There is absolutely no cost to enroll, and no obligation to participate in research, even when a researcher has requested contact. Participants are free to decline any or all research opportunities, and can withdraw at any time by contacting CoRDS@sanfordhealth.org.
16. What does “research” mean? What might researchers request from participants?
CoRDS participants may be contacted for an unpredictable variety of research opportunities. These could include natural history studies, which strive to learn more about a rare disorder; or clinical trials, which test the safety and efficacy of an experimental drug or treatment. Researchers may ask participants to complete a survey, or they may request a biological specimen (like blood, saliva, tissue, etc.). They may want participants to travel, or may send study materials to their participants. CoRDS doesn’t know in advance who will want to contact each individual. However, by enrolling in CoRDS, participants can learn about these research opportunities and decide in which, if any, they would like to participate.
17. Why hasn’t a participant been contacted for research yet?
It is difficult for CoRDS to predict when researchers will want to contact a participant. The CoRDS Scientific Advisory Board reviews access requests regularly, and working as quickly as possible to provide applicable research opportunities to eligible participants. If a participant has not yet heard about a research opportunity, it could mean that a researcher has not yet requested to contact that individual. It is also possible that CoRDS has tried to contact that individual with no luck – be sure to keep the questionnaire updated so CoRDS has an accurate mailing address and email address on hand!
18. A participant can’t log into the database. What should he or she do?
CoRDS tries to fix technology bugs as quickly as possible – but sometimes they slip by unnoticed! We apologize for any inconvenience and would be very grateful to hear about issues with the website or enrollment portal. Just send an email to CoRDS@sanfordhealth.org with a description of the error and CoRDS personnel will address it as soon as possible.
If a username and/or password error occurs, email CoRDS and CoRDS personnel will reset the username and password and return it as quickly as possible.
19. How does a participant withdraw from CoRDS?
Participants are free to withdraw their information from the registry for any reason, at any time. To do so, simply contact CoRDS personnel at 605-312-6413 or via email at CoRDS@sanfordhealth.org. Once the participant withdraws from CoRDS, all of the participant’s identifiable information will be removed and future researchers with access to the registry will not see the participant’s de-identified record. Participants may still be contacted by those researchers with whom they had previously released their contact information.
20. What if a participant forgets their username and password?
Contact CoRDS personnel at 605-312-6413 or at CoRDS@sanfordhealth.org to request a new portal link, username, and password.
21. What else is CoRDS up to?
Check out the latest News and Events to learn about upcoming educational opportunities, talks, gatherings, and the biggest CoRDS event – the annual Sanford Rare Disease Symposium! Also get live updates by connecting with CoRDS on social media - Facebook, Twitter, Tumblr, and Pinterest – and learn more about rare disease research and advocacy at the monthly Twitter #CoRDSChat.
22. Where can visitors learn more about rare diseases?
Visit our Learn page to find helpful links and educational material developed here at Sanford Research. Also watch this short CoRDS Video to see how CoRDS helps accelerate research into rare diseases, or view the CoRDS Flow Chart for an overview of how CoRDS works. All are welcome at the monthly #CoRDSChat, which highlights rare disease patient groups and other key stakeholders to discuss topics around rare diseases.
23. Can Participants refer others to the Registry?
Absolutely. Anyone who may be interested in learning more or enrolling is welcome to submit the CoRDS Registry Form, visit the CoRDS site, or to contact CoRDS personnel at 605-312-6423, CoRDS@sanfordhealth.org.
24. Still have questions?
The CoRDS team loves to hear from individuals interested in the registry and is happy to answer any questions they may have. Please contact CoRDS personnel via the information below.
Have Questions? Please Contact:
Coordination of Rare Diseases at Sanford (CoRDS)
2301 E 60th Street North
Sioux Falls, SD 57104