Frequently Asked Questions
Below you can find answers to some frequently asked questions. If your question is not listed here, please contact one of the research nurses or researchers.
Are my test results and data stored anonymously?
The data collected during your study visits is stored in a central database. Your data is stored using a pseudonym. In this way, the researchers analyzing your data are not able to link the data directly to you. Only closely associated study doctors and study nurses will be able to retrieve your personal information in case of abnormal test results.
Will I receive the results of my study tests?
The results of the study tests are reviewed after each study visit by one of our study physicians. In case of abnormal test results, you will be contacted. In the case of the HIV-positive participants at the AMC HIV-clinic, the participant’s HIV-physician will be contacted as well. Participants at the GGD were able to indicate during their first study visit whether we are permitted to inform their GP (family doctor) about their test results. If permitted by these participants, abnormal test results will be sent to their GP (family doctor).
Is it possible to join the study as a new participant?
Currently a sufficient number of people are enrolled in the AGEhIV Cohort Study. Therefore it is not possible to enroll as a new participant. In the future, the study will probably be reopened for new participants.
Is a lumbar puncture or brain scan part of the standard AGEhIV study visit?
No, the lumbar puncture and brain scan are not part of a standard AGEhIV study visit.
However, a sub study has been performed within the AGEhIV Cohort Study to test the function of the brain and eyes. Approximately 103 HIV-positive participants from the AMC and 78 HIV-negative participants from the GGD have participated in this study. They underwent a brain scan, extensive memory assessments, eye examinations, and a lumbar puncture. This substudy has now been completed.
