GET INVOLVED
Our mission is to produce clinical practice guidelines for all the major clinical and social areas involved in the care of people with EB, corresponding patient versions for the EB Community, and EB infographics detailing essential information for low-resource settings.
The EB healthcare resources that we create are only made possible with the help of you, the international clinical community.​ Your involvement ensures that your expert knowledge in EB and other clinical areas 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 on how to get involved and where to sign up below.
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It is also essential we include the EB patient population in the development of these resources. If you know of anyone living with EB (patient, parent, etc.) who may be interested in taking part, please signpost them to the get involved page for the EB Community 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 best practice information and recommendations for EB clinical and social care. They are predominantly for use by EB and non-EB clinical staff and social services professionals.
Patient versions
Patient versions “translate” the information and recommendations from CPGs into a language style and format for a lay audience. They are aimed at EB patients, parents, and carers to help empower them to be involved in the decision-making process of their/their child's care and treatment. We encourage you to share these guides with your patients, and their families and carers.
EB infographics
EB infographics adapt information and recommendations from CPGs for low-resource settings. They are primarily icon/picture-based. They are for EB patients, parents, and carers living in low-resource settings.
Who can be involved?
There are a number of different people who can be involved in the creation of these resources:
Healthcare experts
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healthcare experts in EB
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healthcare experts in other specialties relating to the topic of the CPG
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)
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 by our CPG Coordinator, Kattya.
What are the benefits of being involved?
Participating, particularly in the CPGs, brings enormous benefits in terms of professional development. You are likely to gain competencies in some or all of the following areas: systematic literature searches, appraisal of scientific publications, and formulation of evidence-based clinical recommendations. Additional benefits in general include building up your professional network, learning from others' experiences, and learning new skills, such as guideline and patient version methodologies.
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)
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.
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 helps to form the recommendations for the CPG based on the evidence found suggesting additional evidence for consider-ation where necessary.
External reviewer
1 day per year
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External reviewers review the comprehen-siveness and accuracy of the interpretation of the evidence supporting the recommendations providing additional evidence for consideration.
Survey respondent
15-20 minutes
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For the development of each CPG, an online survey for EB healthcare professionals 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
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.
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 recommendations in the related CPG.
External reviewer
1 day per year
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External reviewers review the comprehen-siveness and accuracy of the interpretation of the information and recommendations from the related CPG.
Images and/or quote provider
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To accompany the written content in each patient version, we include the personal experiences of EB healthcare professionals. This is usually done through images (photographs, artwork, etc.) and quotes.
Development timeline
It takes approximately 3-6 months for the patient version(s) to be created. These are the steps involved:
EB infographics
3-9 months
The patient versions are developed by our dedicated infographics team with support from (EB) clinical experts with experience in low-resource settings (LRS), external reviewers, and volunteers who pilot new infographics.
LRS expert
1 day per month
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The LRS expert advises the infographics team on the content development for each booklet.
External reviewer
1 day per year
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External reviewers review the comprehensiveness and accuracy of the interpretation of the information and recomm-endations from the related CPGs and LRS experts. They also assess the suitability of icons and language used suggesting alternatives where necessary.
Piloting volunteer
1 day per week for 3 months
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Pilot volunteers review the booklets with patients, providing theirs and their patients' feedback as well as reporting on any adverse events.
Development timeline
It takes approximately 6-9 months for the EB infographics to be created. These are the steps involved:
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