From Santa Barbara, California, USA:
My brother, age 14, was diagnosed about one year ago with Type 1 diabetes. Would it be a good idea for me, a non-diabetic, age 16, to take part in the DPT-1 trials?
I am going to assume that your younger brother is being looked after by a diabetes team that is either part of DPT-1 or is aware of the study and that you can go and talk to them before you make any final decision. At all events, here are some figures that may help you:
With only your younger brother as a first degree relative with Type 1 diabetes, your chances of developing the same condition are between about 3 to 4%. At the age of sixteen you are beyond the peak incidence so that your chances of having a positive antibody test are probably somewhere nearer to 1 in 50. It may be that you really don't want to know what the answer is, in which case you can just not get tested. On the other hand, with such a low chance of being positive, it is much more likely that you would be reassured by the test, and my suggestion would be to go ahead and have it done.
The second part of your decision is what to do if your test is positive for two or more antibodies, making you eligible for the DPT-1 trial. First of all, you need to know that there is a 50% chance that you would be randomly assigned to the 'control' group. This would mean being carefully watched to see if diabetes was developing and receiving good care if it did. If you were in the 'test' group you would be asked to start taking small doses of insulin by injection. This might seem a burden; but on the other hand, the preliminary evidence strongly suggests that this will delay the onset of clinical diabetes. There is another possibility, which is that you could take part in the trial of oral insulin. Again there is the 50% chance that you will be assigned to the control group; but if you are in the other group you would not have to start injections. However, at the present much less is known about how effective oral insulin is in delaying dependance on injected insulin.
There is a third possibility that you should know about. In Europe and Canada there is a big trial underway to see if one of the B vitamins called nicotinamide can also delay the onset of clinical diabetes. The results are not yet known, but some earlier work in New Zealand, which not every diabetes doctor in this country accepts, suggests that in a little over half of those with antibodies, the need for insulin injections can be put off for five years or more. A problem with this approach is that it is also now thought that if you stop the nicotinamide the protection is removed. On the other hand, if you did not want to take part in DPT-1, it might defer clinical diabetes until some better form of vaccination became available.
Original posting 20 Jan 97
Last Updated: Tuesday April 06, 2010 15:08:52
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