CliMGuiDeS: online platform to develop clinical management guidelines for rare conditions

I. Gomez-Paramio, G. Nenadic, J. Clayton-Smith

    Research output: Contribution to conferencePoster

    Abstract

    Rare diseases, defined as occurring at a frequency lower than 5 per 10,000 people, will affect 1 in 17 people at some point in their life. Thus, although individually are rare, collectively are very important. There are around 6000 rare disease, many are life threatening and/or require continuous care.Their optimum management, achievable with specialised clinical management guidelines, improves quality of life, and has financial benefits for the individual, their family and society. However, because of their rarity, the evidence base for some of their therapies and treatments is poor. Thus, guidelines need to be carefully drawn up, based on available evidence and expert consensus opinion and ensure that those with intimate knowledge of the natural history of the disorders are engaged in the process.Unfortunately, its development is a costly process, requiring expert knowledge and time, as the Dyscerne project demonstrated previously.CliMGuiDeS aims to create an all-in-one solution to streamline the development of management clinical guidelines for rare conditions, through the establishment of an online platform providing user-friendly environment with detailed information and tools to facilitate the completion of each step during this complex process. This platform will be globally accessible, and free to establish and sustain; it will not require specific (bio)informatics knowledge, operative-system, server, data-storage, or payable software. Further, to prove that effective work and innovative approaches can provide solutions even under the most challenging situations, this platform will be developed within just three months by one student.
    Original languageEnglish
    Publication statusPublished - 7 Jun 2015
    EventEUROPEAN HUMAN GENETICS CONFERENCE 2015 - SECC, Glasgow, Scotland, United Kingdom
    Duration: 6 Jun 20159 Jul 2015

    Conference

    ConferenceEUROPEAN HUMAN GENETICS CONFERENCE 2015
    CitySECC, Glasgow, Scotland, United Kingdom
    Period6/06/159/07/15

    Keywords

    • Climguides Rare Diseases Bioinformatics Web platform

    Fingerprint

    Dive into the research topics of 'CliMGuiDeS: online platform to develop clinical management guidelines for rare conditions'. Together they form a unique fingerprint.

    Cite this