Table 5 Negative and positive experienced aspects of focus groups participants, including ranking every mentioned positive and negative aspects from 0 (not important) to 10 (very important)

Communication test results during or after participating

75/120

7/12

Empathy employees research center

107/120

8/12

Lumbar puncture

75/120

5/12

Contribute to a possible cure for Alzheimer’s disease

74/120

6/12

Cognitive assessments

70/120

4/12

Personal treatment

68/120

1/12

Communication regarding the result of genetic testing/diagnosis

70/120

3/12

Professionalism of research team

66/120

6/12

Study stopped without result

62/120

2/12

A hearty greeting of reception

65/120

4/12

Appreciation pharmaceutical company

41/120

1/12

More time/attention than in hospital

57/120

5/12

MRI scan

38/120

3/12

Provide lunch

49/120

1/12

Results of neuropsychological assessments are confronting

37/120

1/12

Keep track of brain condition

47/120

2/12

Study partner burden

36/120

3/12

Attention physical condition

46/120

4/12

Little interest in motivation of participants

34/120

1/12

Scientific approach to research

46/120

2/12

Lack of follow-up measurements after and at the end of the study

26/120

3/12

Atmosphere research location

46/120

0/12

Lack of empathy of staff outside of research center

25/120

1/12

Supervision and guidance research team

44/120

1/12

PET scan

21/120

1/12

Neuropsychological assessments

43/120

0/12

Travel distance to research center

21/120

3/12

Study partner involved

36/120

1/12

Not working devices

19/120

0/12

Frequency of visits

28/120

0/12

(unannounced) Changes in research personnel

18/120

2/12

Feedback abnormal results

26/120

3/12

Temperature research center

15/120

0/12

The distance from the study site

25/120

0/12

Starting too early

11/120

3/12

No pressure, always possibility to stop participation

20/120

0/12

No hierarchy

19/120

4/12