Study healthy ageing and intellectual disabilities: Recruitment and design

► Top and middle management need to be involved in the research infrastructure. ► A good communication plan to inform clients, legal representatives and staff is essential. ► Professional care givers are key stake holders in the organization of a health screening. ► The selected instruments are feasible to measure health in older adults with ID. Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a consort of three large care providers with a total client population of 2322 clients of 50 years and over, and two academic institutes. This consort made formal agreements about a research infrastructure and research themes: (1) physical activity and fitness, (2) nutrition and nutritional state, and (3) mood and anxiety. Subsequently, preparation was started by carefully reviewing and selecting instruments to measure a wide set of health variables to answer the research questions. Specific demands of these instruments were that they could be executed efficiently and accurately on-site in a large sample of participants and that the burden of these measurements for participants as well as their caregivers was as minimal as possible. Then, preparation was continued by designing and executing a thorough communication plan for clients, legal representatives and staff of the care providers, preceding the informed consent procedure. In this plan, which had a top-down structure, specific attention was given to personally informing and motivating of key stakeholders: the professional care givers. This preparation led to a recruitment of 1050 participants (45.2%) and to high participation rates in key parts of the assessment. A detailed description is provided about the recruitment and organization and the selected instruments.