Neurological Registry Data Collection Methods and Configuration

Abstract

The purpose of this section of the document is to identify issues related to data collection and registry configuration. When designing a disease registry, it is important to consider the registry's purpose and target population as this will influence the type of data, source(s) of data, and the manner in which it is collected. A data dictionary defining the specific data elements to be collected is key to ensuring registry data quality. Compliance of physicians and patients who provide registry data is instrumental to data collection and should be addressed early. Additionally, it is important to consider if the registry will be linked to other databases. Finally, it is important to address procedures for making changes in the registry and to establish what types of documentation are necessary. In preparation of this section, we reviewed the literature, scholarly sources, and consulted with medical experts and registry/database specialists on the topics mentioned above. RELEVANT LITERATURE In preparing the information below 139 full text articles were reviewed. Conventional and Innovative Roles for Registries Most registries aimed to serve conventional registry roles. As examples, Byrne et al used a registry to examine the natural history of Pompe disease 68 ; three registries pursued quality improvement (stroke care, cardiac catheterization and management of childhood diabetes 69-71); disease subgroup characterization was facilitated for pituitary and lung tumors, 72,73 post-market device monitoring for cardiovascular stents, 74,75 as well as monitoring of treatment outcomes and safety follow up for cardiac transplant patients receiving everolimus, general cardiac care, biological agents for arthritis, giant intracranial aneurysms, and TPA for ischemic stroke. 76-80 Other registries aimed to serve innovative roles: • examining the impact of a diagnostic test on patient management (i.e. PET scanning on management of cancer patients), 81

“If it helps someone, then I want to do it”: Perspectives of persons living with dementia on research registry participation

“…Participants expressed the benefit of researchers using a variety of recruitment methods, such as having informational pamphlets in clinics, in addition to being approached by a research assistant as some may require more time to thoroughly consider the registry enrolment. A published guideline for neurological registry practices in Canada endorsed using multiple strategies to ensure the inclusion of vulnerable populations and increase registry participation rates (Hamilton, Genge, Johnston, & Lam, 2013; Smith, Warner, Johnston, & Atwood, 2013). Persons with dementia may traditionally be viewed as part of a vulnerable population or as unable to contribute meaningful data and thus excluded from research studies due to the clinical presentation of cognitive impairment (Moore & Hollett, 2003; Taylor, DeMers, Vig, & Borson, 2012).…”