My life in Science whilst raising a child with type 1 diabetes

Biomedical Science, Type 1 Diabetes, Coeliac Disease and other findings


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TrialNet – Natural History Study of the Development of Type 1 Diabetes.

So I have registered to take part in a global research study which looks at the development of Type 1 Diabetes, and hopefully will lead to greater understanding of the autoimmunity relating to the condition.  More information can be found at the website www.diabetestrialnet.org.  This network of clinicians, researchers and peer groups has been dedicated to screening over 15,000 people worldwide by testing the blood of close family members for the presence of autoantibodies against pancreatic insulin producing islet cells.

Ethics

I recently attended the AGM of the IBMS in Scotland, and listened attentively at a specific presentation on how the human genome project has opened the gates to studying genomics, and how it may help patients by tailoring treatment methods dependent on the data produced.  I cannot say this field of biomedical science excites me, because that would be an understatement.  I sat listening to the talk with wide eyes and a somewhat, naive expression!  Being an honours year student does that to people.  The talk on genomics briefly addressed bioethics, and the data produced – would patients necessarily want to know if they were at risk?  Other aspects of the talk focused on current treatments that are of major health benefits to patients with life long conditions such as epilepsy. There is no question that Next Generation Sequencing is happening, and it will continue to happen in medicine, but the management of data and treatment plans is a huge undertaking for this new era of patient focused medicine.

So TrialNet was on my mind that day.  I sat thinking, what if my results come back positive?  Or what if my daughter’s result comes back positive more to the point.  I have friend’s who have more than one child with Type 1 Diabetes in the family, and to be honest that is a pretty scary thought for me.  However, the study not only focuses on perhaps “warning” patients of their increased risks, it will be used to shape and build future research and no doubt, add to a great repository of blood awaiting many a chemical application.  This was why I decided to go ahead. The consent forms were completed the day of the AGM, and sent away.  However, my husband and daughter’s forms are still awaiting the pen and ink.  Sadly, I cannot force them/bribe them/blackmail them to make the decision, but I do hope they will take part (c’mon guys).  From a research point of view, I hope they do – but as a mother I am a little more guarded.

I plan to keep reading more information on the TrialNet study, and await my results with an open mind.

One thing, I took from this recently was the comfort that so much research into the aetiology of Type 1 Diabetes and better treatments / cure is ongoing – such as the artificial pancreas study, the recent stem cell research by Dr Melton at Harvard (a fellow parent of a child with Type 1 Diabetes and esteemed scientist), and the studies directed at dual hormone pump therapy funded by JDRF, Medtronic and the Canadian Diabetes Association.

Long may it be funded extensively by the lovely research community!

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