Developing medical guidelines
Rare diseases often lack established treatment protocols due to their rarity and complexity. Medical guidelines provide standardised recommendations for diagnosis, treatment, and management based on best available evidence and expert consensus.
Medical guidelines are developed by a multidisciplinary team of experts, including clinicians, researchers, and patient advocates, who pool their knowledge and expertise to develop evidence-based recommendations. Medical guidelines provide valuable advice for healthcare professionals who are caring for patients with rare diseases around the world. These guidelines help to ensure consistency and quality of care for rare disease patients and families, regardless of where they receive treatment.
Patient groups can develop medical guidelines to help standardise care, promote best practices, and advocate for the needs and preferences of their community. Patient groups have the expertise and firsthand experience needed to fill in knowledge gaps by developing guidelines that reflect the unique needs and challenges of their community. Patient organisations can ensure that medical guidelines are truly patient-centered and reflect the priorities, preferences, and values of those living with the condition.
By establishing standards of care and highlighting areas of uncertainty, patient-led guidelines can drive progress in scientific understanding and therapeutic development for rare diseases.
With thanks to:
Costello Medical provided pro-bono support in the creation of this course.
Resource type
Course
Skill level
Advanced
Duration
2.5 hours
Last updated
May 2024
Resource type
Course
Skill level
Advanced
Duration
2.5 hours
Last updated
May 2024
What will you learn in this course?
- What medical guidelines are
- Why medical guidelines are important for rare diseases
- The guidelines for developing and publishing your own medical guidelines within the NICE framework
Who is this course for?
This course is designed for patient groups who are looking to develop medical guidelines for patient care to guide decisions and criteria regarding diagnosis, management and treatment of their rare disease.
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Resource Content
Background knowledge
What are medical guidelines?
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Who are medical guidelines for?
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Why are medical guidelines important in rare diseases?
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What type of recommendations can medical guidelines make?
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How are medical guidelines developed?
What do medical guidelines normally include?
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The NICE guideline development process
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What to consider before starting to develop medical guidelines
Is developing a medical guideline a priority?
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Forming a committee
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Ask your scientific advisory committee
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Ask your wider scientific community
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Ask your patient advisory committee
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The scoping process
The scoping period
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Decide what your guidelines will cover
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Agree on review questions
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Developing your guidelines
Developing your guidelines
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Writing review questions
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Collect evidence to answer the review questions
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Evidence quality
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Ways of collecting evidence
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Plan the evidence review
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