A Global Patient Register for Narcolepsy.
Under the Coordination of Rare Diseases at Sanford Research (CoRDS), PWN4PWN opened a narcolepsy register.
Based at Sanford Research, a not-for-profit research institution, CoRDS is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll in and for researchers to access.
- 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).
- The registry is compliant with the European Union General Data Protection Regulation (GDPR).
- Importantly, 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 PWN4PWN to have access to the data you provide will allow us to better understand narcolepsy, help us understand where to drive our research initiatives, and let us know how patients need more support.
What is a patient registry?
A registry is a program for collection, storage, retrieval, and dissemination of clearly defined information for a specific purpose. Data collected in this registry includes diagnosis and treatment, management of care, quality of life, and longitudinal information for narcolepsy.
Why a narcolepsy registry?
In one word, PROGRESS. Having a registry specifically for individuals with narcolepsy allows approved researchers to have easy access to useful medical data on many individuals with narcolepsy. Since we will have already collected this data and obtained your consent to share it, researchers can begin to develop better studies much more quickly, and more easily find participants for these studies.
Who should participate?
Everyone with narcolepsy! Participating in the Registry at CoRDS is a great way for participants to take part in helping to identify the specific causes, symptoms, and treatments of narcolepsy.
Is personal information safe?
Internet polls, questionnaires, and surveys are often used to collect information quickly and easily from respondents. However, to publish their results, researchers must only use information obtained in a specific way. The patient data they use must have written approval from patients to use their data this way and must adhere to strict privacy regulations. The registry is compliant with the European Union General Data Protection Regulation (GDPR). CoRDS has worked hard to ensure that researchers can use the information you provide.
CoRDS submits every questionnaire to their Institutional Review Board for approval. The IRB is a group that reviews the ethics of medical research studies.
Informed consent also safeguards participant data. When registering to participate in CoRDS, participants (or their representatives) are given a chance to read the consent documentation before filling out the questionnaire. For any questions, participants can call CoRDS at + 1 877 658 9192 or send an email to email@example.com..
If researchers receive approval to look at the registry or questionnaire responses, they will be given only anonymous data without identifiable information. PWN4PWN can only access your identifiable information if you choose to share it with us when you complete your registry questionnaire.
Your privacy is also protected even if you indicate that you are willing to be contacted for additional research. For example, a researcher might contact CoRDS to ask for additional information from all participants who have a specific symptom, such as loss of hearing. CoRDs would then contact every participant in the registry who said that they had loss of hearing and that they would like to participate in additional studies. CoRDS would then provide these people with the researcher’s contact information, and it would be up to the individual participants to contact the researcher to participate in additional research. CoRDS will never provide your contact information to anyone.
When should I update registry information?
Updates can be done at any time and should only take 10-15 minutes. But updates should be done at least every year, after any significant change in the participant’s health, and immediately after their 18th birthday. If the participant was enrolled in the registry as a minor, their data becomes inaccessible 30 days after their 18th birthday unless and until they are re-enrolled.
What is the purpose of the registry?
Researchers will be able to compare your answers with those of others. The researchers will then be able to detect patterns, identify common symptoms and gain insights into effective and ineffective treatments. Your answers will provide a better overall understanding of narcolepsy and how the disease develops/progresses over the course of a lifetime.
Our goal is to collect and provide valuable information and speed up research studies on narcolepsy and help start clinical trials for treatments.
The information you provide to this registry can help to:
• Drive research towards better treatments and possibly a cure
• Allow healthcare professionals and researchers to learn more about the disease
• Create a strong patient and research community
• Enhance treatment guidelines for patients to improve quality and management of care
Can data be collected worldwide?
Yes, the registry can be accessed all over the world with the link provided on our website. International participation is highly encouraged.
How is my personal information used and protected?
The information you provide will be provided to researchers studying narcolepsy. CoRDS has put many safeguards into place to ensure that this information will be kept safe and confidential. The registry is compliant with the European Union General Data Protection Regulation (GDPR).
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 send an email to firstname.lastname@example.org requesting a paper version of the CoRDS Patient Registry Questionnaire.
Set Up A CoRDS Profile ACTIVATION FORM
Complete the CoRDS activation form. Please use a desktop/laptop computer or tablet.
The system will generate a username for you based on your name. You will need to create a password and set up a security question. Once completed, click the LOGIN button to login into your CoRDS Patient Registry Profile.
Complete CoRDS Standard and Disease-specific Questionnaire
The questionnaire will take about 30 minutes to complete. 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.
Once you have answered all the questions, click SUBMIT and you’ve completed the questionnaire! Remember, you can always log in 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.
Thank you for taking the time to complete the questionnaire and for making an important contribution to narcolepsy research!