We are an international network of healthcare professionals, researchers and consumers producing systematic reviews of evidence for treating cystic fibrosis and other genetic disorders (haemoglobinopathies. coagulopathies and inborn errors of metabolism). Our editorial base is located in Liverpool, UK.
If you are interested in working with us, please go to Join Cochrane. If you are already a member, please and take a look at our vacant priority titles. Cochrane is moving its editorial process to the online submission system Editorial Manager. Potential authors interested in submitting a review proposal to us, please log in to Editorial Manager at Editorial Manager with your Cochrane account details and select Submit New Manuscript. For further information see our instructions for authors on submitting new proposals. If we are interested in your initial proposal we will invite you to submit a full review proposal via an online form within Editorial Manager.
The European Cystic Fibrosis Society (ECFS) is developing new evidence-based standards of care guidance for people with CF taking variant-specific (modulator) therapies, e.g. Kaftrio™ (Trikafta). The Cochrane Cystic Fibrosis and Genetic Disorders Group is proud to support the ECFS and collaborate on the development of this guidance, which will incorporate important published Cochrane Reviews. The document will be produced independently by international experts with no input from the pharmaceutical industry. The guidance will reflect the views and concerns of stakeholders including people with CF and their families.
Topics to be covered will include: eligibility for therapy; management of aspects of CF such as airway clearance and nutritional issues (which have been seen to require very different approaches after starting modulator therapy); psychological and social issues; and cost-effectiveness.
This new standards of care guidance is expected to be published in 2022. For further information, or if you wish to contribute to this project, please contact Professor Kevin Southern who is leading the committee producing the guidance.
|In December 2020 we published the first systematic review which includes evidence for the new triple therapies for people with CF over 12 years of age who have at least one copy of the F508del gene variant. In this updated review, Professor Kevin Southern and his author team have assessed and presented the evidence from a total of 19 randomised controlled trials of different corrector therapies which recruited 2959 participants worldwide. Previously presenting evidence from monotherapy and dual therapies, this updated version of the review now includes triple therapies. Three trials of the triple therapy known as Kaftrio™ in the UK (Trikafta™ in North America), and lasting from one to six months, present results for 633 people who took part in the trials. Professor Southern has described this new therapy as “transformative” for those who are eligible, with significant improvements in clinical outcomes, such as lung function and quality of life scores with few accompanying side effects. You can read the full review here and the plain language summary here.|
|Latest output published on The Cochrane Library|
|On Issue 6 2021 of The Cochrane Library we have published a total of 196 reviews and 24 protocols. There are also six registered titles currently progressing to protocol status. The production of these reviews involves a network of over 1000 contributors (authors, consumers and referees) throughout the world. We very much welcome interest from new consumers, referees and potential reviewers. Further information can be obtained by contacting the group.|
By getting involved in these priority-setting partnerships you can help shape future research.
We have already successfully been involved in a priority-setting partnership for CF and you can see the results here. A second iteration of this is now being considered.
A priority-setting partnership has also been undertaken in bleeding disorders; more information can be found here.