Join the Patient Registry at CoRDS

Recurrent Viral Meningitis is a puzzle.

Let’s work together to solve it.   

The Recurrent Meningitis Association (RMA) has partnered with the Coordination of Rare Diseases at Sanford (CoRDS) to create the first patient registry targeted at supporting research efforts for Recurrent Viral Meningitis.

Those who have been diagnosed with, or suspect they may have, Recurrent Viral Meningitis are eligible to participate in the registry.

Please continue scrolling to learn more.

About the Patient Registry and FAQs

What is a patient registry?

A patient registry is a way to collect information about an illness or disease, all in one place, from many individuals.  Specifically, the Recurrent Viral Meningitis registry at CoRDS seeks to collect information about recurring meningitis of a viral cause.

Within the patient registry, the person with the diagnosis or suspected diagnosis is referred to as the “participant”.

The Recurrent Viral Meningitis patient registry at CoRDS can be filled out online or by mail. This patient registry can be filled out by the participant, a trusted love one of the participant, or the participant’s doctor. 

What is the Coordination of Rare Diseases at Sanford (CoRDS)?

CoRDS, based at Sanford Research, is a not-for-profit research institution which acts as 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 and for researchers to access. CoRDS works with patient advocacy groups, individuals, and researchers to coordinate the advancement of research into the 7,000 rare diseases.

Find out more by clicking here.

How can a patient registry help rare disease researchers?

Especially in the case of rare diseases, it can be hard for researchers to gather enough data in order to truly understand trends in a disease or illness. Patient registries allow a way for approved researchers to access large amounts of data provided by participants to use for research purposes. This can then be published in peer-reviewed scientific journals, and shared with other scientists. 

Who is eligible to participate in the Recurrent Viral Meningitis patient registry at CoRDS?

You are eligible to participant in the Recurrent Viral Meningitis patient registry at CoRDS if you suspect that you have Recurrent Viral Meningitis OR if you are currently diagnosed with any of the following diseases:

  • Recurrent Viral Meningitis

  • Benign Recurrent Aseptic Meningitis

  • Benign Recurrent Lymphocytic in Meninigits

  • Benign Recurrent Meningitis

  • Herpes Encephalitis

  • Recurrent Benign Herpes Simplex Meningitis

  • Recurrent Genital Herpes

  • Recurrent Lymphocytic Meningitis

  • Recurrent Meningitis

  • Herpes Zoster

  • Mollaret’s Meningitis

  • If you do not see your disease listed, please contact us for more information by:

    Email: [email protected]

    Phone: +1 (208) 268-8280 ext: 1

Note: The patient registry is currently only available in English.

 

How do I join the Recurrent Viral Meningitis patient registry at CoRDS?

For detailed information on how to become a participant in the Recurrent Viral Meningitis patient registry at CoRDS, please scroll to the section, “Ready to get started?” below.

If you need help registering, please contact CoRDs at:

Email: [email protected]

Phone: +1(877) 658-9192

I am already part of the Recurrent Viral Meningitis patient registry at CoRDS. How and when should I update my information?

Updates to your information should only take 15-20 minutes to complete. You may update your patient registry by clicking here.

You may update your registry as often as you would like. Current information will help interested researchers to carry out their research more easily and accurately.

We suggest updating your information when:

  • It has been a year since you last updated or entered your information

  • You have experienced a suspected or confirmed case of viral meningitis

  • You have just turned 18 (NOTE: in this case, we suggest updating immediately. If you enrolled in the registry as a minor, your data becomes inaccessible 30 days after your 18th birthday unless and until you re-enroll.)

How do I know that my information in the patient registry is safe? Who can see my information?

CoRDS has put many safeguards into place to ensure the safety of the information you provide.

In the process of signing up to participate in a CoRDS patient registry, you are given a chance to read information about the registry, and then sign a form that indicates you understand what you are doing. You can sign this form either electronically (if completed online) or with a pen (if completd on paper). If you have any questions about this, please contact CoRDS.

Additionally, information you provide is kept strictly confidential. The questionnaires that you complete will be associated with a code—a computer generates an ID number that is assigned to your identifiable information (name, address, etc.) and to your responses to the questionnaires.  This is referred to as “de-identified” information. Once researchers receive approval to look at the registry or questionnaire responses, they will be given only de-identified data.

Please note that the Recurrent Meningitis Association (RMA) can only access your de-identified information if you choose to share it with us when you complete your registry questionnaire.

Your privacy is also protected even if you indicate on your questionnaire that you are willing to be contacted to participate in additional research projects. For example, researchers might contact CoRDS and tell them that they want to send an additional questionnaire to all participants who have a specific symptom, such as a history of viral meningitis. CoRDS would then provide these participants with the researchers’ contact information. In this way, it is up to the participant to decide what they would like to participate in additional questionnaires.

Want more information? Please click here or contact CoRDS at:

Email: [email protected]

Phone: +1(877) 658-9192

I have a question about setting up my patient registry account.

If you have a questions about setting up your registry account, please contact CoRDS at:

Email: [email protected]

Phone: +1(877) 658-9192

I don't understand one of the patient registry questions.

If you don’t understand a question within the standard CoRDs section of the patient registry, please contact CoRDS at:

Email: [email protected]

Phone: +1(877) 658-9192

 

If you don’t understand a question within the Recurrent Meningitis Association section of the patient registry, please contact the Recurrent Meningitis Association at:

Email: [email protected]

Phone: +1(208) 268-8280 ext:1

Note: Please allow at least 24 hours for a response.

  Ready to Get Started? 

Important things to know before getting started:

  • The registry can be completed online (electronically) OR by mail (paper). If you chose to complete the paper format, please request a paper version from CoRDS by calling +1(877)658-9192 or by sending an email to [email protected]

  • There are 2 sets of questions to answer. (1) the standard CoRDS Questionnaire, which is completed only once by all participants of CoRDS registries and (2) The Recurrent Viral Meningitis Questionnaire, which is specific to those diagnosed with or suspected to have Recurrent Viral Meningitis and should be regularly updated. 

  • Electronic CoRDS patient registries are best viewed on a laptop or computer.Viewing on a phone or table may distort text.

  • When completing the questionnaire, you have the ability to skip or save questions and return to them later. However, please remember to go back and complete unanswered questions whenever possible. Doing so will help researchers to get better data.

Step 1: Creating your CoRDS Profile

Complete the CoRDS Screening Form

 

  1. Begin by clicking the “CLICK HERE TO START” button above.
  2. This will direct you to the CoRDS SCREENING FORM.
  3. Answer each question. Click “SUBMIT” when complete. You will be directed to the LOGIN SETUP screen

NOTE: In order to access the Recurrent Viral Meningitis patient registry, you must enter an appropriate “rare disease diagnosis”. Although your actual diagnosis may differ slightly, an “appropriate diagnosis” includes any of the following:

  • Recurrent Viral Meningitis
  • Mollaret’s Meningitis
  • Recurrent Lymphocytic meningitis
  • Recurrent Benign herpes simplex meningitis

Questions? Contact CoRDS at: 

Email: [email protected]

Phone: +1 (877)658-9192

Complete the Login Setup

  1. Once on LOGIN SETUP page, a username will automatically be created for you.
  2. You will then be asked to create a password and a security question.
  3. Once complete, click “LOGIN” to proceed to the questionnaire.

Step 2: Complete the CoRDS Questionnaire

Complete the CoRDS Patient Registry Questionnarie

  1. Once you are logged into your CoRDS Patient Registry Profile, click “START QUESTIONNAIRE” near the top of the page.
  2. Please complete the questionnaire. This is a standard set of questions completed by all participants regardless of rare disease diagnosis.

NOTE: Click “SAVE & NEXT” button in the upper-right hand corner of the screen to proceed through questionnaire.

Step 3: Complete the Recurrent Viral Meningitis Questionnaire

Complete the CoRDS Patient Registry Questionnarie

  1. Once you complete the CoRDS patient registry questionnaire, you are ready to begin the Recurrent Viral Meningitis Questionnaire.
  2. Please complete the questionnaire to the best of your ability.
  3. Click “SUBMIT” at the end of the questionnaire to complete.

NOTE:

  • Remember, you can save and return to your questionnaire at any time. Even if you click SUBMIT, you can still go back to edit your answers.
  • Please update your information at least annually by logging back into your CoRDS patient registry profile.

On behalf of everyone at the Recurrent Meningitis Association, thank you for taking the time to help researchers solve the puzzle of Recurrent Viral Meningitis!

  Still Have Questions? Contact Us.

Recurrent Meningitis Association (RMA)

 

Email: [email protected]

Phone: +1 (208) 268-8280 ext:1

Coordination of Rare Diseases at Sanford Health (CoRDS)

Email: [email protected]

Phone: +1 (877)658-9192