HT, YK, TM, YH, SF, MT, TN, and HS were involved in drafting the manuscript or revising it critically for important intellectual consent.
JHY – contributed by revision it critically for intellectual consent.
MA was involved in all aspects including the study concept and design, acquisition, analysis and interpretation of the data, critically revising the manuscript for intellectual consent and giving a final approval to this manuscript.
Exclusion criterion was the inability to give consent due to physical, intellectual or psychiatric disease.
The Coleman study has been cited as intellectual support for "informed consent" laws in at least eight states (Kansas, Michigan, Nebraska, North Carolina, South Dakota, Texas, Utah and West Virginia).
Individuals unable to give consent as a result of mental, intellectual, or cognitive deficits are excluded, however, such could appear in the Registry through collection of family history data but without collection of bio-samples from them.
Also, in our sample, especially the parents of children with severe intellectual disabilities did not always give consent for a cognitive evaluation at t2, although they did give consent for a psychiatric re-evaluation.
Special attention was paid to ensuring that the researchers were sensitive to the various ways in which people with intellectual disabilities may express withdrawal of consent.
Legal issues, related to patient consent for distribution of multimedia [ 22] and intellectual property rights, digital copyright issues and licensing/sharing model [ 23], should be clarified.
Patients with an intellectual impairment that precludes provision of informed consent and those presenting for care to a non-GP provider within a participating practice will be excluded.
