Clinical relevance – the value of patient experiences

Friday, September 30th, 2011

Since 2006 Clinuvel has trialed SCENESSE® in a truly unique group of individuals: patients living with erythropoietic protoporphyria (EPP), a rare genetic blood disorder which causes an absolute intolerance to light.

EPP prevents patients from leading ‘normal’ lives, especially outdoors. It is one of the few diseases that manifest clinically with initially invisible symptoms which cause severe dermal pain for several days. This not only presents a challenge for diagnosis and treatment, but also for generating meaningful clinical trial results – those which are measurable numerically and are used by regulatory authorities to evaluate the efficacy of a drug in a patient population. Here, real life patient experiences during a trial can play an important role in providing clinical relevance and analysing hard data. (more…)

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A coffee a day keeps skin cancer at bay? Look a little deeper…

Thursday, August 18th, 2011

We tweeted it earlier this week and it’s been run across numerous news sites: new research has suggested that coffee – or more specifically caffeine – can help reduce the risk of skin cancer. It’s a fascinating story and one which deserves further review.

The research, conducted across multiple US sites and supported by National Institutes of Health grants, sought to expand upon an existing understanding of the correlation between the intake of caffeinated beverages and a decrease in the incidence of non-melanoma skin cancers. (more…)

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Ultraviolet radiation and its effects on the skin

Wednesday, June 22nd, 2011

Ultraviolet (UV) radiation forms part of the electromagnetic spectrum between visible light and X-rays; it is invisible to the human eye. UV light can be separated into three bands, UVA (400-320nm), UVB (320-290nm) and UVC (290-100nm). Of the UV radiation that reaches the Earth’s surface from the sun, approximately 6% is UVB and 94% UVA.

Skin maintains a curious balance with UV radiation. When UV impacts upon skin, the various wavelengths of light penetrate to different levels and thus have a number of effects.

(more…)

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Dear 16-year-old Me

Thursday, May 5th, 2011

A great new viral video from the David Cornfield Melanoma Fund went live earlier this week. Check it out:

 

 

Head to the DCMF website for more on their work. You can read more about melanoma on our website.

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Melanoma/Skin Cancer Detection and Prevention Month

Tuesday, May 3rd, 2011

May is Melanoma/Skin Cancer Detection and Prevention Month in the US, and with summer just around the corner in the northern hemisphere, this is a timely reminder of the dangers of unprotected UV exposure.

Skin cancer is one of the most common forms of cancer in America, with more than 3 million cases diagnosed each year and over 10,000 deaths from the disease. Worryingly, unlike most forms of cancer which are declining, skin cancer rates in America are on the rise. There are three common types of skin cancer – basal cell carcinoma, squamous cell carcinoma and melanoma. Of these, melanoma is the least common, and yet the most frequently lethal form. (more…)

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Porphyrias: a disease grouping by cause, not symptoms

Monday, April 18th, 2011

Held biennially, the Porphyrins & Porphyrias conference (P&P) is the world’s largest gathering on the porphyrias – a group of metabolic disorders causing biochemical disruptions in the pathway of the body which synthesizes haem (heme).

As a result of each of these disruptions, the body presents with unique symptoms ranging from skin symptoms and phototoxicity – as those seen in erythropoietic protoporphyria and congenital erythropoietic porphyria – through to acute attacks of abdominal pain, seen most commonly in acute intermittent porphyria. In short, no two porphyrias are clinically identical yet they are discussed as a single group of disorders with a similar cause. As a matter of fact, there are eight variations of porphyrias, each with a specific clinical manifestation of disease. (more…)

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Treating ‘sun allergy’: an ongoing quest

Tuesday, March 1st, 2011

Following a curious tweet on her ‘sun allergy’ we invited Amanda from Texas to share her experiences as a guest blogger in the hope that they may help others. This is the second of two parts, you can read part one here.

Hiding from the sun wasn’t an option. Granted, I was reluctant to incur the wrath of UV light: the itching, the bumps, the disfiguration that affected my confidence. Thankfully my PLE was confined to my arms.

Yet, with dermatologists telling me nothing could be done outside an occasional cortisone injection, I was determined to explore any and all treatment options. (more…)

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How I explain EPP to the world

Friday, February 18th, 2011

As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP as a guest blogger. You can read Victoria’s first post here.

When I was first diagnosed with EPP there was a huge sense of relief: someone had actually listened to me and believed that something wasn’t quite right.

That said, I am not overjoyed at having the condition as it restricts my life so much. When Spring starts to approach I get anxious as I dread having a reaction; my freedom to go out feels more restricted. (more…)

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A clinical success: study retention rates

Thursday, February 10th, 2011

We were delighted this week to be able to announce the successful completion of our first Phase II study conducted in the US, a placebo controlled, randomised trial of SCENESSE® (afamelanotide) for patients diagnosed with erythropoietic protoporphyria (EPP) (CUV030). (more…)

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Childhood reactions and two decades to diagnose

Friday, February 4th, 2011

As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP on the blog.

My name is Victoria; I am 26 years old and live in England. I was diagnosed with EPP at the age of 24. I fought for many years to get people to listen to me and understand EPP. I want to help raise awareness for this condition and also encourage those who suffer in silence to fight to get someone to listen to them. This is part of my story. (more…)

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