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Πέμπτη 14 Σεπτεμβρίου 2017

Developing a protocol to identify and prioritise research questions for psoriasis: A James Lind Alliance Priority Setting Partnership

Abstract

Background

Psoriasis affects over two million people in the UK. It confers a significant psychological and social impact on individuals and an associated high economic cost to the National Health Service. There are many unanswered questions about psoriasis.

Objectives

1. To develop a protocol in order to work with patients, families, carers and healthcare professionals to identify psoriasis uncertainties.

2. To agree by consensus a top ten list of psoriasis uncertainties.

3. To disseminate prioritised unanswered questions to researchers and funders to promote work focused on answering the uncertainties considered most important by stakeholders.

Methods

A Psoriasis Priority Setting Partnership has been established to gather psoriasis uncertainties following the transparent methodology advocated by the James Lind Alliance. A Steering Group composed of stakeholders will disseminate a survey to patients, families, carers and healthcare professionals to collect information on important psoriasis questions. After removing duplications, uncertainties will be collated and checked against existing evidence to determine whether any have already been resolved. 'True uncertainties' will be circulated to stakeholders in a second survey where they will be ranked by importance. At a final workshop, information will be distilled to generate a top ten list of uncertainties.

Results

By following the protocol outlined in this paper a prioritised list of uncertainties will be identified which will be inform the psoriasis research agenda.

Conclusions

Research, targeted to address priorities identified by a range of stakeholders is imperative. This project will inform policymakers and research funding bodies of what really matters to these groups.

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