How did a research participant get enrolled into the EPAD cohort?

Joining the EPAD Longitudinal Cohort Study (LCS) involved a number of steps.

1. 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.
2. If participants were interested in joining the study, they were be asked to identify a relative or friend who knew them well and was willing to be their study partner. This person was asked to answer some standard questionnaires.
3. Once participants read the information sheet and had all of their questions answered, they were asked if they wish to sign the consent form. Their study partner also received an information sheet and was asked to sign their own consent form.
4. On the day that participants signed the consent form, they were asked to stay in the unit to complete its first visit which was called a ‘screening visit’. This allowed our researchers to double check that participants were suitable to enter the EPAD Cohort.
5. Additional visits were planned for participants after 6 months, 1 year, 2 years, 3 years, and 4 years. We arranged these follow up visits to make sure that participants’ 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, participants had the opportunity to ask any questions they might have. Once participants were happy with their involvement in the study, they signed a consent form. They 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 participants and their health.

Annual visits

The annual visit to the research centre could take up to about 5 hours in total. Participants were asked to fast before attending so that fasting blood samples was 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 participants consented for us to do so.