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I’m a patient: show me the trial data

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2336 (Published 16 April 2013)
Cite this as: BMJ 2013;346:f2336

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  1. Alex Lomas, patient, London
  1. alex{at}alexlomas.com

The patient Alex Lomas is taking a biological drug for Crohn’s disease, and he wants to know why the maker is trying to prevent disclosure of trial data that may well affect him

I have an obsession with data. I have instruments in my house so I know how hot each room is and to warn me if the fridge door has been open for too long. I record my weight and blood pressure using devices connected to the internet so that I can monitor long term trends. I use my smartphone to track how much walking and exercise I do.

I was diagnosed with Crohn’s disease about 20 years ago, when awareness of inflammatory bowel diseases was not as high as it is today.1 The treatment decisions made at the time of my diagnosis had unfortunate side effects for me as a teenager. High doses of prednisolone led to Cushing’s syndrome, and I was mercilessly teased about my appearance at school. With time came a reduction in the dose of …

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