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Table 2 Getting a new specialist site to recruitment stage requires:

From: Developing a Dementia Research Registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programme

A principal investigator to act as champion for that site

Local Research Management & Governance approval

Resources for a local co-ordinator, who initially carries out and then coordinates data entry, acts as contact person for data queries and liaises with site staff about recruiting patients. To date the financial resources have come from different streams of research network funding. New staff may need to be recruited, or honorary contracts established for those already in other posts.

Agreement from local IT departments who need to give new staff access to electronic databases, and to set up shared drives where none existed previously. The local information governance manager needs to be satisfied about data security.

Service manager agreement to provide office space, promote the use of the registry to front line clinical staff, allow computer use and staff involvement in seeking consent, as well as facilitating best working practices for each site.

Site team involvement in supporting the lead clinician in identification of patients to inform about the study