Our Research
At PKDIA we are keen to support our community by exploring issues that are raised by our community and offer up to date information about various aspects of living with pyruvate kinase deficiency.
This is a new area of work for us, led by Carl Lander, our Research Director.
The areas we plan to explore are:
Is there a link between PK Deficiency and kidney damage (injury)?
How does ageing affect people living with PK Deficiency?
Is there a link between nutrition and being well with PK Deficiency?
To do this, will review the current literature (secondary research) for each of these issues and draw conclusions based upon what we find. We will work alongside our Medical Advisory Board and seek to draw up recommendations for clinical practice or as advice for our community.
Sometimes, we may undertake primary research where we ask our community for their thoughts and feelings directly. When we undertake this research, we will ensure that we have participant consent and a clear explanation of what we will do with the results. Please be assured that all of this type of research will be undertaken in the strictest confidence and that no personal details will ever be revealed.
We will always publish our research, either in suitable journals, at conferences or directly on this website. We aim to be totally open and transparent at all times, after all, we are doing this work on your behalf.
We recently asked the community about their knowledge and experience of iron overload. This was a really useful body of information. We plan to repeat this with an expanded questionnaire to gain even more information.
