Research

Getting Started

1. How do I sign up for the Food Allergy Patient & Family Registry?

Enrolling in the Food Allergy Patient & Family Registry is an easy process over the internet. Just fill in the required registration information. Then, take your first survey.

You can sign up to participate in the Registry for yourself and/or for one or more family members, such as minor children. If you have food allergies and wish to participate, sign up for yourself and describe your own experiences by completing a survey questionnaire. If you have one or more children with food allergies, add a new profile for each child and then fill out a new survey for each child.

Adult participants (age 18 and older) should complete their own surveys.

You must read and agree to the Terms and Conditions of the Registry to join. You must also provide a current/active email address. We use your email address to:

  • Provide you with email notification when your user account has been set up.

  • Authenticate your user account.

  • Notify you when future survey updates are available for you to complete on the Registry website, or, in some cases, notify you of interest from researchers in viewing your information.

You will be asked to select a user name and password. You will use both to login and access your personal data and surveys in the Registry. Please note, your user name and password can be anything you choose, except for those that are already taken. You are NOT required to use your personal name for your user name. Record your user name and password in a safe place – you will need to enter it every time you log on.

You will receive a “Welcome” email with a confirmation message when the registration process is complete.

This message will be sent to the email address you used to register. Click on the link to verify your email and login. Once you do, you will also have access to the first survey—the Food Allergy History and Diagnosis Survey.

You are enrolled in the Food Allergy Patient & Family Registry AFTER you have entered and submitted the Food Allergy History and Diagnosis survey within the website. Please note, you MUST click the “Complete” button to finish this process. Until this step is completed, your survey is considered pending.

You can also see a video about how to create an account, and another video about how to create your individual health profile.

2. What if I did not receive an email verifying my registration?

If you did not receive a Welcome email verifying your registration in the Food Allergy Patient & Family Registry, please check your “junk” email folder or check for an email message notifying you of SPAM email. Email administrators often flag as junk mail incoming messages that contain “welcome” or other designated terms in the subject line. If you are unable to locate a welcome email, you can try to login to the Registry by entering your user name and password. If successful, you will be directed to the Food Allergy Patient & Family Registry User Dashboard. You may contact us at FoodAllergyRegistry@aafa.org for additional help

3. Why do I have to give an email address to proceed with the Registry?

Several pieces of information are sought before consent, including an email address, user name, password, security questions and a site key. Use of this information is covered by the Private Access Privacy Policy. Your email address is used to confirm that you, the user, are in control of the account. We do this to reduce the chance that a user is pretending to be someone else, since it confirms that the user is at least in control of the email account he or she is using.

4. What internet settings are required for participating in the Registry?

You will need a good, reliable internet connection and a recent version of an internet browser such as Firefox, Safari or Google Chrome. Please do not use Internet Explorer or Edge for this survey platform. Preferred browsers are Google Chrome, Mozilla Firefox, or Apple Safari. Mobile devices may not work with this survey. Please use a computer for the best results. To determine what version internet browser you are running, click on the “help” button of your browser menu; then click the “About” button of the browser you are using. This should give you the version number.

The registry platform that we use, the Platform for Engaging Everyone Responsibly (PEER), lives on our website but is hosted by peerplatform.org. That means it needs third-party cookies to run. Internet Explorer blocks third-party cookies, so if you try to use the registry with Internet Explorer you’ll be redirected to another site or you might receive error messages instead of being able to use the registry on our website. We want you to have access to all of our other resources, too – so for the best experience possible, please consider using another browser.

You may contact us at FoodAllergyRegistry@aafa.org for additional help

5. Are mobile devices supported?

For best results, we recommend taking part from your desktop or laptop, on the most recent version of your preferred browser such as Firefox, Safari or Google Chrome. You will not have the best experience if you try to use the Registry platform on mobile devices such as phones and tablets. At this time, Internet Explorer is not recommended.

6. How do I log on to the Food Allergy Patient & Family Registry to access my survey?

When you first complete the registration process, you will be automatically directed to the Food Allergy Patient & Family Registry User Dashboard. From there, click on the “Start” button.

As part of the registration process, you will set up a personal user account that holds your survey data. For data security purposes, when there is no activity in your survey (i.e., no typing of information or movement from one page to another) for 20 or more minutes, your session will time out. You will have to login again in order to re-access your information.

To login, go to Login page. Enter your user name and answers to your security question(s). Enter your password only if you see the site key (picture and caption) that you chose when you registered. If you do not see the site key, please contact us.

7. Can I get a copy of the Food Allergy Patient & Family Registry survey?

Online registration is required to get started and to gain access to the first and subsequent surveys. After a survey is complete, you can export a copy of the survey with your responses. You will see the questions you answered.

8. What if I leave the website too long and get logged out?

If your session times out, just go back to Login page and reenter your user name and password. Identify the picture/object you see by selecting its name from the dropdown list. Then, click “Login”. For data security purposes, when there is no activity in your survey (i.e., no typing of information or movement from one page to another) for 20 or more minutes, your session will time out. You will have to login again in order to re-access your information.

9. How long will it take to complete the Food Allergy Patient & Family Registry surveys?

The actual amount of time required to complete the registration survey will vary from one participant to another, depending on availability and accessibility to survey information. Examples of data requested include your medical history and perhaps your family’s medical history, which may or may not be readily accessible.

All surveys can be completed at your own pace. Once you have completed the registration/ enrollment process, you may log on and off the Registry website as often as needed to enter survey information, before submitting it in its final form. Note that it is NOT important that each survey question be answered to be able to submit the survey and fully participate.

Remember, joining this Registry is entirely voluntary, and you do not have to share any information you do not want to. With few exceptions, you can simply skip questions you prefer not to answer.

We recognize there are times when you may not have specific information. We have tried to provide ways for you to show these cases for most items (for example, by answering “unsure” or “unknown” or by entering a comment related to an item). There is a “comments” section at the very end of the survey.

The Food Allergy Patient & Family Registry lets patients lead the way to help improve the lives of people with food allergies.
Participate in the Food Allergy Patient & Family Registry today!

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