You are being invited to take part in a survey as part of a research study. Before you decide whether to take part or not, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish.
Introduction
People with food allergy need to avoid the food(s) they are allergic to in order to keep safe. Along with being prepared to deal with possible breakthrough reactions, making safe food choices is a key part of food allergy management. This can be a daily challenge as many life situations involve food and there are limitations in food labelling and in awareness of food allergy in the community. As a consequence, reactions to foods by accident may occur, which can be serious in some people. A group of health care professionals and patient representatives have created a Task Force on Food Allergen Ingestion Risk (‘FAIR’) within the European Academy of Allergy and Clinical Immunology (EAACI). This Task Force is working to better understand the challenges and needs of patients and families living with food allergies when trying to make safe food choices. The ultimate aim of this Task Force is to help make things safer for people living with food allergy.
Why have I been invited?
You are an adult or a young person aged 16 or above with food allergies.
What questions will I be asked?
Questions will cover, in the survey part 1, some background information about your food allergy, recent accidental reactions, the support and advice received from healthcare professionals to manage food allergy, challenges faced when trying to make safe food choices and quality of life. This is expected to take approx. 15minutes to complete. Then, in an optional part 2, questions will cover your views about making safe food choices when eating out, shopping, traveling or when in the education or work setting. This is expected to take approx. another 10 minutes to complete. Then, if you have been prescribed an adrenaline autoinjector, you will be invited to complete an optional part 3 where we ask you about your views on a new nasal adrenaline spray that has been recently approved in USA and Europe. This is expected to take approx. another 5 minutes to complete. We highly encourage you to complete the 3 parts in the survey, as they will provide us with very valuable information about areas to improve to help people living with food allergy when trying to keep safe and avoid allergic reactions.
What will happen to me if I take part?
We would like to invite you to complete an online survey that will take approx. 25-30 min to complete. The survey is hosted on the Qualtrics platform.
What are the possible disadvantages and risks of taking part?
There will be no risks or disadvantages by taking part in the survey. Some people may find it upsetting recalling allergic reactions they have experienced.
If you find any questions to be upsetting, then you will have the option to either skip the question entirely or end the survey. You can also contact the researchers directly via email (FAIRsurvey@outlook.com) if you wish you relay any concerns you have about the survey itself or if you feel that answering any of the survey questions has had a negative impact on you. Please note that ending the survey will not delete previous responses of any fully completed sections of the survey.
What are the possible benefits of taking part?
We cannot promise the study will help you directly but the information we get will provide valuable information into families and patients’ real-life challenges and concerns when trying to stay safe. This will help inform future outreach, educational and support strategies that we plan to develop with patients’ representatives /organisations to tackle unmet needs. This should ultimately reduce the risk of exposure to foods, facilitate safe inclusivity in daily life activities and enhance quality of life for patients and families living with food allergy.
Do I have to take part?
It is up to you to decide whether or not to take part. If you do decide to take part, please read this information carefully and at the end of this block you will be asked to consent. If you decide to take part, you are still free to withdraw at any time before submitting the survey and without giving a reason.
How will my data be stored and what will happen to the results of the research study?
This is an anonymous survey. Please note, no personally identifiable information will be included with responses (i.e., IP addresses, email addresses). Respondents cannot be identified. The results may be presented a scientific and patient-focused meetings. An open access publication of the results endorsed by EAACI is planned.
Who is organising and funding the research?
The European Academy of Allergy and Clinical Immunology (EAACI).
Who has reviewed the study?
Imperial College Research Governance and Integrity Team (RGIT) as well as the interim Head of the National Heart and Lung Institute at Imperial College London, Clare Lloyd, have reviewed and approved this study.
Contact for Further Information:
Thank you so much for taking the time to complete the survey.
If you have any queries of concerns regarding this survey or project, then please don’t hesitate to reach out to the study investigators at the following email: FAIRsurvey@outlook.com
As this survey is anonymous, we are unable to provide you with a physical copy of an information sheet and a signed Informed Consent form for you to keep. However, upon completion, you can easily print the survey directly from your phone or computer for your personal records.
Introduction
People with food allergy need to avoid the food(s) they are allergic to in order to keep safe. Along with being prepared to deal with possible breakthrough reactions, making safe food choices is a key part of food allergy management. This can be a daily challenge as many life situations involve food and there are limitations in food labelling and in awareness of food allergy in the community. As a consequence, reactions to foods by accident may occur, which can be serious in some people. A group of health care professionals and patient representatives have created a Task Force on Food Allergen Ingestion Risk (‘FAIR’) within the European Academy of Allergy and Clinical Immunology (EAACI). This Task Force is working to better understand the challenges and needs of patients and families living with food allergies when trying to make safe food choices. The ultimate aim of this Task Force is to help make things safer for people living with food allergy.
Why have I been invited?
You are an adult or a young person aged 16 or above with food allergies.
What questions will I be asked?
Questions will cover, in the survey part 1, some background information about your food allergy, recent accidental reactions, the support and advice received from healthcare professionals to manage food allergy, challenges faced when trying to make safe food choices and quality of life. This is expected to take approx. 15minutes to complete. Then, in an optional part 2, questions will cover your views about making safe food choices when eating out, shopping, traveling or when in the education or work setting. This is expected to take approx. another 10 minutes to complete. Then, if you have been prescribed an adrenaline autoinjector, you will be invited to complete an optional part 3 where we ask you about your views on a new nasal adrenaline spray that has been recently approved in USA and Europe. This is expected to take approx. another 5 minutes to complete. We highly encourage you to complete the 3 parts in the survey, as they will provide us with very valuable information about areas to improve to help people living with food allergy when trying to keep safe and avoid allergic reactions.
What will happen to me if I take part?
We would like to invite you to complete an online survey that will take approx. 25-30 min to complete. The survey is hosted on the Qualtrics platform.
What are the possible disadvantages and risks of taking part?
There will be no risks or disadvantages by taking part in the survey. Some people may find it upsetting recalling allergic reactions they have experienced.
If you find any questions to be upsetting, then you will have the option to either skip the question entirely or end the survey. You can also contact the researchers directly via email (FAIRsurvey@outlook.com) if you wish you relay any concerns you have about the survey itself or if you feel that answering any of the survey questions has had a negative impact on you. Please note that ending the survey will not delete previous responses of any fully completed sections of the survey.
What are the possible benefits of taking part?
We cannot promise the study will help you directly but the information we get will provide valuable information into families and patients’ real-life challenges and concerns when trying to stay safe. This will help inform future outreach, educational and support strategies that we plan to develop with patients’ representatives /organisations to tackle unmet needs. This should ultimately reduce the risk of exposure to foods, facilitate safe inclusivity in daily life activities and enhance quality of life for patients and families living with food allergy.
Do I have to take part?
It is up to you to decide whether or not to take part. If you do decide to take part, please read this information carefully and at the end of this block you will be asked to consent. If you decide to take part, you are still free to withdraw at any time before submitting the survey and without giving a reason.
How will my data be stored and what will happen to the results of the research study?
This is an anonymous survey. Please note, no personally identifiable information will be included with responses (i.e., IP addresses, email addresses). Respondents cannot be identified. The results may be presented a scientific and patient-focused meetings. An open access publication of the results endorsed by EAACI is planned.
Who is organising and funding the research?
The European Academy of Allergy and Clinical Immunology (EAACI).
Who has reviewed the study?
Imperial College Research Governance and Integrity Team (RGIT) as well as the interim Head of the National Heart and Lung Institute at Imperial College London, Clare Lloyd, have reviewed and approved this study.
Contact for Further Information:
Thank you so much for taking the time to complete the survey.
If you have any queries of concerns regarding this survey or project, then please don’t hesitate to reach out to the study investigators at the following email: FAIRsurvey@outlook.com
As this survey is anonymous, we are unable to provide you with a physical copy of an information sheet and a signed Informed Consent form for you to keep. However, upon completion, you can easily print the survey directly from your phone or computer for your personal records.
Informed Consent:
Survey: ‘Keeping safe with food allergies’
Name of Principal Investigator: Dr Marta Vazquez-Ortiz MD, MSc, PhD
To reiterate:
As this survey is anonymous, we are unable to provide you with a physical copy of an information sheet and a signed Informed Consent form for you to keep. However, upon completion, you can easily print the survey directly from your phone or computer for your personal records.
As previously stated, you can withdraw from the survey at any time you wish by simply exiting the survey and leaving the rest of the questions blank. If you have already completed any sections of the survey in full, this data will be automatically submitted and we will not be able to exclude this data from our analysis due to the anonymous nature in which it was collected. If you start the survey but decide to withdraw before completing any sections in full, then no data will be collected in this case.
Please confirm that you consent to ALL of the following points below:
1. I confirm that I have read and understand the Intro paragraph of the Survey with the Title: ‘Keeping safe with food allergies’ and have had the opportunity to ask questions which have been answered fully.
2. I understand that my participation is voluntary, and I am free to withdraw at any time, without giving any reason and without my legal rights nor treatment / healthcare being affected.
3. I consent to take part in the Survey with the Title: ‘Keeping safe with food allergies’?
RequiredSurvey: ‘Keeping safe with food allergies’
Name of Principal Investigator: Dr Marta Vazquez-Ortiz MD, MSc, PhD
To reiterate:
As this survey is anonymous, we are unable to provide you with a physical copy of an information sheet and a signed Informed Consent form for you to keep. However, upon completion, you can easily print the survey directly from your phone or computer for your personal records.
As previously stated, you can withdraw from the survey at any time you wish by simply exiting the survey and leaving the rest of the questions blank. If you have already completed any sections of the survey in full, this data will be automatically submitted and we will not be able to exclude this data from our analysis due to the anonymous nature in which it was collected. If you start the survey but decide to withdraw before completing any sections in full, then no data will be collected in this case.
Please confirm that you consent to ALL of the following points below:
1. I confirm that I have read and understand the Intro paragraph of the Survey with the Title: ‘Keeping safe with food allergies’ and have had the opportunity to ask questions which have been answered fully.
2. I understand that my participation is voluntary, and I am free to withdraw at any time, without giving any reason and without my legal rights nor treatment / healthcare being affected.
3. I consent to take part in the Survey with the Title: ‘Keeping safe with food allergies’?