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As is so often the case when discussing patient based research most
of the discussion relates to patients involved in clinical trials. It is
also important to consider informing participants in observational studies
of the findings of the research. However, such studies often recruit over
long periods and follow-up is even longer. Results also emerge over time
as data mature and different questions are addressed. Furthermore unlike
clinical trials there is often no clear, primary end point and summarising
multi-faceted research can be difficult. Despite these problems,
providing feedback is possible in observational studies and it is
important that the funders of such research recognise that this
constitutes a valid, but often considerable, part of the cost of a study.