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Living with Sickle Cell Disease
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Would you be willing to participate in experimental treatment or research for sickle cell disease?

What concerns or fears would prevent you from participating in research or a clinical trial for sickle cell disease?

9 Replies
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If it does not endanger my already poor health, absolutely! If there are risks to it, if they are well explained and the experimental treatment or research are appropriately monitored, with full medical coverage of any adverse consequences, I’m in.

In a way, that's how I started taking hydroxycarbamide. As part of a study group of haemoglobinopathy patients.

It is very important that we help the medical community and that we take part in research activities as well. In Portugal, as it's a very small market, there aren't any, ever. In the UK, I have already participated in one last year.

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Yes I would be willing to take part in any research or clinical research for SCD. Obviously I hope the research will take place near where I live etc.

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Absolutely the more research done the better our needs are understood and the right treatment and care is provided. I am complex and the healthcare profession and the public need to know the complexities we face. I have just come back from hospital and absolutely furious.

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I would definitely recommend everyone to participate in trials and research: I have done so before. The more we know the more we can do. As long as everything is safe then I see no problem with helping researchers gain more insights into how sickle-cell works.

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I agree 100% with the above comments. All support given can only strengthen the science, knowledge and awareness. I have done previous research and will continue to help where I can.

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I would participate so long as it doesn't contribute to any loss of income. I'd be concerned about trial induced crisis though

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My participating in any experimental treatment or research will depend on the objective of the experiment and if there are any risk levels involved.

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no i wouldn't risk it, i was meant to have sickle cell for a reason

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I would participate so long as it doesn't contribute to any loss of income. anything to help find us a cure and to help awareness and funding for SCD.

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