Impact of research on a small population

2006 Conference

The key issue addressed by this poster will be the impact of research on a small population affected by a rare condition, Niemann-Pick Disease (NPD), for which there is currently no treatment or cure. The poster will inform people about NPD and the difficulties encountered by peopleaffected by this condition in securing and bringing to fruition research projects.

Using the poster we will illustrate how the disease affects the population, explain why clinical research is so important, detail what clinical trials have already been undertaken and outline the contribution made by the families. We will present a parents perspective, explaining the eagerness of families to participate in research.

We will address the ethical implications of research on a small population, often with close inter-family links. We will discuss the financial implications relating to geography of those involved, and the possibility of over trialling.

We hope peoplewill learn about NPD, become aware of the need for research into this and other conditions affecting small numbers of patients and come to understand the emotional effects of research versus no research on families who are desperate not only to help but benefit from it.