How did a research participant get enrolled into the EPAD cohort?
Joining the EPAD Longitudinal Cohort Study (LCS) involved a number of steps.
- The EPAD study team contacted participants by phone, e-mail or letter – each centre manages this process in their own way. They gave some information and were able to answer any questions participants may have.
- If you were interested in joining the study, you were be asked to identify a relative or friend who knew you well and was willing to be your study partner. This person was asked to answer some standard questionnaires.
- Once you read the information sheet and had all of your questions answered, you were asked if you wish to sign the consent form. Your study partner also received an information sheet and was asked to sign their own consent form.
- On the day that you signed the consent form, you were asked to stay in the unit to complete your first visit which was called a ‘screening visit’. This allowed our researchers to double check that you were suitable to enter the EPAD Cohort.
- Additional visits were planned for you after 6 months, 1 year, 2 years, 3 years, and 4 years. We arranged these follow up visits to make sure that your health has not changed and to measure changes in certain tests that may or may not be related to Alzheimer’s disease.
What happened at EPAD cohort study visits?
During each visit, several assessments were necessary.
First screening visit
On arrival at the research site for the first screening visit, you had the opportunity to ask any questions you might have. Once you were happy with your involvement in the study, you signed a consent form. You were then be asked to complete a number of forms and took part in interviews with the study doctor, nurse and psychologist. These forms and interviews gathered a range of information about you and your health.
Annual visits
The annual visit to the research centre can take up to about 5 hours in total. You were asked to fast before attending so that fasting blood samples can be taken. There was also be a separate visit for a brain scan (MRI). The MRI brain scan takes about 80 minutes. Including the time to get ready for the scan, participants were expected to be at the imaging facility for a total visit time of 2 hours. These assessments were compulsory for EPAD research participation.
Screening feedback
EPAD’s study staff did not conduct a full and thorough physical examination. However, if during any of the testing we noted any health issues, we discussed these with participants and provided help in planning potential next steps if you consented for us to do so.
The EPAD team are happy to explain all the details about these assessments and answer any questions you may have. Please get in touch if you would like to speak to someone, or find out more from our research participant Eileen, who gave us some feedback on her study visit experience.