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Cochrane Cystic Fibrosis and Genetic Disorders Group

Welcome

The Cochrane Cystic Fibrosis and Genetic Disorders Group

Entrance to Alder Hey HospitalThe Cochrane Cystic Fibrosis and Genetic Disorders Review Group comprises an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders (haemoglobinopathies. coagulopathies and inborn errors of metabolism).

Activities of the Group are co-ordinated by its editorial base, located within the Institute of Child Health, University of Liverpool and based at Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom.


Congratulations!

We would like to congratulate one of our haemoglobinopathy editors, Dr Samir Ballas, Emeritus Professor of Medicine, Thomas Jefferson University who was selected as the 2015 recipient of the American Academy of Pain Medicine (AAPM) Patient Advocacy Award. The Patient Advocacy Award recognizes activity of an individual in advocating for appropriate evaluation and treatment of patients suffering from pain. This award was created to honor those healthcare professionals whose deeds reflect their recognition of the importance and impact of the specialty of Pain Medicine. The Academy recognizes only a few individuals for their outstanding contributions to the field of Pain Medicine each year. Dr. Ballas has been a long time advocate for excellent pain management in people with sickle cell disease.

Podcast

You can see our Co-ordinating Editor summarise the findings of the updated review on antibioitic strategies for eradicating Pseudomonas aeruginosa in people with cystic fibrosis in his podcast below.

 

Published reviews and protocols

On Issue 6, 2015 of The Cochrane Library we have published a total of 142 reviews and 28 protocols. There are also 17 registered titles currently progressing to protocol status. The production of these reviews involves a network of over 900 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

Recently published reviews include:

  • Interventions for treating intrahepatic cholestasis in people with sickle cell disease

  • Rituximab for treating inhibitors in people with inherited severe hemophilia

  • Maternal and foetal outcomes following natural vaginal versus caesarean section (c-section) delivery in carriers and women with bleeding disorders

  • Clotting factor concentrates given to prevent bleeding & bleeding related complications in children with hemophilia A or B

  • Potentiators (specific therapies for class III and IV mutations) for cystic fibrosis

Our newest protocols are:

  • Calcium channel blockers for preventing cardiomyopathy due to iron overload in people with β thalassemia

  • Enzyme replacement therapy for infantile-onset Pompe's disease

  • Treatment of dental complications in sickle cell disease

  • Interventions for improving adherence to treatment for cystic fibrosis

Webpage for consumer summaries

Why don't you take a look at the consumer website for review summaries by clicking hereIt offers language translations, author podcasts and new Cochrane products (like PEARLS) all in one place!  The Consumer Network are continually working to improve the site further, so use the "Tell us what you think" link in the bottom-left of the search box to let them know what you like or don't like about this new site.

 

 

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Page last updated: Fri 26th Jun 2015 15:14:43 CEST