EB HEALTH CARE
Get involved
The EB healthcare resources that we create are only made possible with the help of you, the international EB Community.​ Your involvement ensures that your expert knowledge helps to guide the care of everyone living with EB worldwide. Because of this, we are always looking for your feedback on our current resources as well as your input into the creation of new ones.
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If you are interested in getting involved, please consider joining our CPG Network. You can find out all the information about how to get involved and where to sign up below.
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If you are an EB healthcare professional, find out how you can get involved by clicking the button below.
Which resources can I get involved in?
There are two types of resources you can involved in:​
Clinical Practice Guidelines (CPGs)
CPGs provide treatment information and recommendations for healthcare professionals on different aspects of medical and social care in EB. These are important for you too and we encourage you to share the guidelines with your different healthcare professionals to ensure they provide you with the best care possible.
Patient versions
Patient versions “translate” the information and recommendations from CPGs into a language style and format that is more easily understood by everyone. They are designed specifically with people living with EB in mind helping to empower you to be involved in the decision-making process of your/your child's/relative's care and treatment.
Who can be involved?
There are a number of different people who can be involved in the creation of these resources:
EB patient experts
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people with EB
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parents of a person with EB
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family members of a person with EB
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caregivers (professional and non-professional)
Clinical experts
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clinical experts in EB
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clinical experts in other specialties relating to the topic of the CPG
Other experts
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EB patient advocates
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health economics experts
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EB researchers
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social care experts
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guideline methodologists
Do I need to have any previous experience to be involved?
No, you do not need to have any previous experience. How ever you decide to get involved, you will be fully supported.
How can I get involved?
There are a number of different roles within the two projects you can choose to be involved in. A brief overview of the roles available, and the approximate time commitment required and responsibilities for each are listed below.
Clinical Practice Guidelines (CPGs)
Lead/co-lead
1/2 day - 1 day per week
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The Lead/co-lead leads the entire CPG development process, from submitting the funding application to submitting the final manuscript to a journal for publication. The Lead/co-lead also leads the panel members through this process.
Panel member
1 day per month
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Each panel member ensures that patient views, experiences, and concerns inform the whole of the panel’s work, and identify areas where preferences of people living with EB may need to be acknowledged in the CPG.
External reviewer
1 day per year
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External reviewers are not involved in the development process of the CPG but review the final manuscript before it is submitted for publication. A reviewer reviews the CPG from the perspective of someone living with EB providing constructive feedback for the panel to consider.
Survey respondent
15-20 minutes
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For the development of each CPG, an online survey for the EB Community is created. The answers to the survey directly affect the CPG's development, outcomes, and care recommendations.
Development timeline
It takes approximately 24-36 months for a CPG to be created. These are the steps involved:
Patient versions
Lead/co-lead
1-2 days per month
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The Lead/co-lead leads the content development for the patient version(s). This includes helping to decide on the number of booklets needed and for which audiences.
Panel member
1/2-1 day per month
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Each panel member helps with forming the content for the patient version(s). The content is derived directly from the information and recomm-endations in the related CPG ensuring that the language used is suitable for anyone to understand.
External reviewer
1 day per year
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External reviewers review the patient version(s) from the perspective of people living with EB and provide constructive feedback for the panel to consider.
Images and/or quote provider
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To accompany the written content in each patient version, we include the personal experiences of people living with EB. This is usually done through images (photographs, artwork, etc.) and quotes.
24-36 months
The CPGs are developed by an international interdisciplinary panel of clinical and patient experts (sometimes other experts are involved too). External feedback is also required as part of the development process.
3-6 months
The patient versions are developed by a smaller number of members from the related original CPG development panel. External feedback, quotes, and images from the EB Community are used to show personal experiences.
Development timeline
It takes approximately 3-6 months for the patient version(s) to be created. These are the steps involved:
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