title: [Nothing about us without us: health care research with people with intellectual disabilities].
abstract: While the patients' perspective has been included in health care research, the participation of people with intellectual disabilities in research on their health has been limited, and considered to be difficult. However, they are vulnerable and experience more health problems than the general population. Legal issues regarding inclusion of people with intellectual disabilities are clarified in international and Dutch law, and should be respected. Aside from the legally responsible persons, various other stakeholders also play a role, which should be realized and considered when developing research plans. Inclusion of people with intellectual disabilities themselves in research, not only as subjects but also as advisors, researchers and decision-makers could make research more relevant and attractive for themselves, for health practice and for the research community.
authors.affiliation: Radboudumc, afd. Eerstelijnsgeneeskunde, Nijmegen.
authors.forename: Henny M J
authors.initials: HM
authors.lastname: van Schrojenstein Lantman-de Valk
authors.forename: Jenneken
authors.initials: J
authors.lastname: Naaldenberg
mesh_terms: D003657:Decision Making; D006302:Health Services Research / Q000331:legislation & jurisprudence; D006304:Health Status; D054624:Health Status Disparities; D006801:Humans; D008607:Intellectual Disability; D009426:Netherlands; D035842:Research Subjects / Q000523:psychology*; D035862:Vulnerable Populations / Q000331:legislation & jurisprudence / Q000523:psychology