Reporting of Research Results
The Department of Twin Research studies the genetic and environmental basis of age-related complex diseases and traits, and is not a clinical testing programme. However, we have received ethics approval to provide feedback for clinically useful results that have clear diagnostic criteria for some of the tests that we undertake. Below is a summary of our reporting process.
The following tests undertaken during research at the Department of Twin Research have clear diagnostic criteria and can be shared with study participants: DXA scan, Mini Mental State Exam, blood pressure, full blood count, blood glucose, blood lipids, renal function, liver function and bone profile. The results of these tests are summarised in a results letter and posted to study participants and their GP (if requested) within 4-6 weeks of the visit as approved by London – Westminster Research Ethics Committee. If any of the results shown are out of range, we recommend that that they see their GP for further advice. An example of the results letter can be seen by clicking HERE.
Verbal feedback for a number of tests is given during the visit such as eye test and lung function tests. However since the tests are not clinical tests and are done under a research setting by research staff, clinical advice cannot be given. However in some instances it might be recommended for a study participant to visit their GP if a test falls outside of normal limits.
Some of the information and data that is collected at the twin visit is of no clinical significance as it is still in the research phase (such as the flora study). This means that we do not yet know the significance of the results, and at present neither we, nor a GP, would be able to interpret them. Our genetic and metabolic data is generated using automated methods to generate large amounts of data suitable for our population studies. It is neither suitable nor validated for clinical interpretation on an individual level and for this reason is not released to study participants.
During the course of our studies we may come across an incidental finding. Incidental findings are previously undiagnosed medical conditions that are discovered unintentionally during a research test. For example, an MRI scan to look at normal brain function may reveal a tumour or a colonoscopy may reveal polyps. Different studies have their own ethics guidelines which detail how to approach incidental findings. In general, however, we will ensure that all incidental findings of potential clinical significance are reported to the study participant.
Reporting of Research Results from Collaborating Departments
During the twin visit, some volunteers attend tests in other collaborating Departments. It is the responsibility of those Departments to report any clinical or incidental findings directly to the study participants.