Data collected and commitment to participants
OPTIMA has collected information on both cognitively impaired and cognitively normal elderly people during life and correlated this information with the findings at post mortem brain examination, if consent to brain donation has been given.
Participants followed a schedule of assessments, being seen at least annually, from when they joined the cohort until they die. If a participant were to become unable to participate fully in the assessments, their involvement would continue through gathering information from a study partner (someone who knew them well).
The data collected from OPTIMA’s research includes:
- Neuropsychological assessments
- Brain scans - Computed Tomography (CT), Functional Magnetic Resonance Imaging (fMRI) and Magnetic Resonance Imaging (MRI)
- Blood samples
- Cerebrospinal fluid samples (CSF)
- Physical examination data
- Histopathological information following brain donation
A Mutual Commitment: The research has always depended on the goodwill and commitment of the participants and OPTIMA was concerned to return this commitment. Research staff were involved in the design and development of the study since its inception and in particular the research nurses’ role was crucial in developing the therapeutic relationship that is so important to the well-being of participants during their involvement in the project.
OPTIMA supported participants and carers by:
- providing feedback about our assessments with an explanation of the findings
- helping increase understanding of the changes they may be experiencing in everyday life
- liaising with other professionals involved in their healthcare
- putting them in touch with support agencies
- if consent to brain donation has been given, families are always offered the opportunity to discuss the results of the neuropathological report.