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Important guidance

Important guidance

14 October 2022
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Some important tips related to COS development. The concept is very straightforward, however, certain aspects may be unclear, somehow confusing and you may find information below useful.

(a) It is very important to distinguish between “what to measure?” and “how to measure?”:

The first step in the COS development is to undertake a Delphi on ‘what to measure’, meaning that we need to produce a list of outcomes which will be used in the Delphi process.

Please do not forget that outcome names and descriptions should not contain the “how” (e.g. insruments to be used). As a matter of example, “Food allergy-related quality of life” is an outcome that we would like to present to stakeholders in the upcoming “what to measure” Delphi process. However, we do not ask their views on the best ways of measuring this outcome. This is a part of “how” to measure the outcome. We will work on “how to measure” in due course.

(b) COS is aiming to set-up a minimum necessary selection of outcomes to be measured in every study of food allergy. Every outcome is important but not every is critical to measured in every study. This does not mean that other outcomes will not be studied, they most definitely will, depending on the researchers/healthcare professionals interests and local context. However, they just will not be measured in every study.

Although most of you are very familiar with the COS concept, please find some helpful information below. More than happy to provide more details if needed.

What is a core outcome?

When treatments are tested, researchers look at the effect on patients by measuring an “outcome”. At the moment, different studies often measure different outcomes which makes it difficult to compare and combine results. We can’t measure every outcome in every study, but the PC-COS project wants to find out what outcomes are so important that they should always be measured in research and clinical care for long COVID.

You can watch a short video explaining what core outcomes are, why they are important and how patients and health professionals are involved in developing them.

What are core outcome sets?

Subtitles are available in French, Portuguese, Dutch, Chinese, German, Spanish, Greek, Italian, Hungarian, Russian and Bangala languages.

Some additional information regarding COS can be found at https://comfa.eu/useful-resources/

Some useful manuscripts we would suggest you reading are the following:
Related to COS development:

Related to qualitative food allergy research:

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We would still like to hold a meeting with those of you able to join and discuss the current itteration of the list of outcomes on the 4th of November during C3 meeting as some of us will be joining C3 anyway. The meeting will take place between 18.00 and 19.15 (UK time) on the 4th of November.
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We would like to thank everyone who have provided their feedback to the list of outcomes we circulated a week ago! Very grateful for your kind involvement, for finding time to comment. We would like to remind you that if you have not submitted your reimbursement for the Porto meeting please do not forget to claim it via 'e-cost'.
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The long list of outcomes
14 October 2022

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We would like to thank everyone who have participated in COMFA Annual Meeting 2022! Very grateful for your kind involvement, for finding time to come to Porto in person and for spending countless hours in front of your computers, which is very burdensome as all of us know. Thank you for great presentations, which all covered very...