Ethical Aspects

All participants in 10/66 studies have been recruited following informed signed consent. Persons with dementia who lack capacity for consent were recruited on the basis of a relative’s signed agreement. Illiterate persons were read the information sheet and consent form, and invited to express their consent verbally, which was witnessed. Participants were invited to make a gift of genetic material (blood) to the local research institutions who act as custodians in whom are vested full rights for scientific and commercial exploitation, subject only to limitations upon the phenotypes to be investigated. All studies have been approved by the responsible local ethical committees in each country/ centre as well as by the ethical committee of the Institute of Psychiatry, King’s College London.

The submissions used in these applications, together with the information sheets and consent forms to be used can be downloaded below:

Pilot Studies

Information sheet
pilotinf.doc (MS Word)
Consent form
pilotcons.doc (MS Word)
Agreement form
pilotagree.doc (MS Word)
Notes regarding informed consent
notes.doc (MS Word)

Baseline population based survey and DNA collection

Ethical submission
popn_ethics.doc (MS Word)
Information sheets and consent forms
popn_consent.doc (MS Word)

Casefinder study and caregiver RCT

Ethical submission
rct_ethics.doc (MS Word)
Information sheets and consent forms
rct_consent.doc (MS Word)

Follow-up population based survey (incidence phase)

Ethical submission, information sheets and consent forms
fupopn_ethics.doc (MS Word)