Websites relating to cystic fibrosis

Dr Keith Barnard recommends various websites about cystic fibrosis

Website of the week
Decent images relating to cystic fibrosis are few and far between, but this page does offer a quick insight into the pathological basis of many of the problems associated with this condition.

It is a series of pathology slides that remind us of the unseen damage that is occurring to the lungs, bowel, heart and pancreas.

Some are not specific to cystic fibrosis but they are all relevant. It will only take a minute to go through these and remind us why vigorous treatment is essential and further research vital.

Why go there: illustrates the damage of CF.
Downside: little clinical information.
Information from: Georgetown University, Washington, DC.
Address: Please click here

Detailed information
I confess these pages look somewhat overwhelming, but I looked for a concise online account of cystic fibrosis aimed at GPs and failed miserably.

So, if you really do want to know everything about it, this is a bang up-to-date account that covers all the bases and then some.

It is not for a casual glance, but I am sure if you have a patient with this condition, this will make sure you are well-briefed to deal with it.

Why go there: all you need to know.
Downside: you almost need time off to digest it all.
Information from: eMedicine.
Address: Please click here

I’m not sure how good an idea it is to recommend this site.

Screening is an important issue, and after much muttering since 2001, plans to roll it out nationwide were finally announced in 2004. But finding out exactly what the state of play is from this website is nigh on impossible.

Cystic fibrosis screening of the newborn was supposed to be available everywhere by the end of last month, but I could not find out if this has happened. The site seems designed to send you round in circles.

I suspect obfuscation, but maybe I’m too cynical.

Why go there: to try and find out what’s going on.
Downside: navigation is a nightmare.
Information from: the NHS.
Address: Please click here

Leaflets on screening
After feeling rather let down by the screening website, I was greatly impressed by these downloadable leaflets about the screening process.

They are colourful, well illustrated and written in plain language for adults. They are so good I would suggest that you invest a few bob and print them off in full colour.

Your patients will not only be impressed, they’ll be well informed about all the tests for the newborn, not just cystic fibrosis. If, that is, the tests are all offered in your area.

Why go there: you’d be proud to offer these.
Downside: none.
Information from: UK National Screening Committee.
Address:  Please click here

Best site for patients
This site had a makeover some time ago, and it is a huge improvement.

When I last looked I thought it was dull and unimaginative and eclipsed by its American counterpart.

All that has changed and this site is excellent. It has a bright, clean look and is full of encouraging images of smiling active children.

Most importantly, it is packed with good advice that is easy to find. The explanation of the disease is enhanced by a genetic family tree showing the genetic transmission, and there is also an ‘ask the expert’ section where specific problems can be addressed. I am impressed.

Why go there: top notch for patients.
Downside: no section for medical professionals.
Information from: Cystic Fibrosis Trust.

Gene therapy
Patients are bound to ask about gene therapy. It’s always in the news, and unfortunately the media slant always seems to be that the final cure for almost everything is just around the corner.

To read the true story, go to the website of this unified research programme of the three leading gene therapy groups in the UK.

Why go there: to get the facts, not the fiction.
Downside: none.
Information from: UK Cystic Fibrosis Gene Therapy Consortium.

Dr Barnard is a former GP in Fareham, Hampshire

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