Which DATA Are Migraine Patient Registries Collecting? a Targeted Review
Author(s)
Ofori A1, Llewellyn S2, Bottomley C2, Kousoulakou H2
1Vitaccess Ltd, South Croydon, UK, 2Vitaccess Ltd, Oxford, UK
OBJECTIVES Patient registries are used as a source of real-world data for healthcare providers, payers and regulators for evidence-based decision-making. This review aimed to identify and summarize key characteristics of global patient-reported and clinical data migraine registries, including the datasets collected. METHODS Migraine registries were identified through targeted searches of the ClinicalTrials.gov and PubMed databases, and Google Scholar. Registry publications and websites were assessed for availability of information on target patient population characteristics (including comorbidities); funding agency; level of patient advocacy group (PAG) involvement; and details of the registry dataset, including diagnosis/disease classification, episodes, mortality, treatments, hospitalizations/healthcare utilization, productivity loss, and patient-reported outcomes (PROs), including quality of life (QoL). RESULTS Of 19 identified registries reporting data for migraine patients, 21% were multinational while the other 79% were national-level. The number of patients per registry ranged from 57 to 16,789 and data collection periods from 90 days to 5 years. Data were available for demographics (in 100% of registries), diagnosis/disease classification (95%), comorbidities and episodes (84% each), treatments and PROs (74% each) including QoL (42%), productivity loss (58%), hospitalizations/healthcare resource use (32%), and mortality (5%). Seventy-nine percent of registries were initiated during the last 10 years, of which 53% were industry-funded; thirty-three percent of registries initiated during that period are still known to be active. Of the three registries (16%) that reported PAG involvement, only one provided details: collaborating with PAGs for patient engagement and recruitment. Sixty-eight percent of registries have published analytical results based on their datasets. CONCLUSIONS A rise in the number of industry-funded migraine patient registries during the last 10 years indicates increased interest of stakeholders in the real-world data these registries can provide. There is currently a paucity of data relating to hospitalization/healthcare resource use, QoL, productivity loss, and mortality.
Conference/Value in Health Info
2020-11, ISPOR Europe 2020, Milan, Italy
Value in Health, Volume 23, Issue S2 (December 2020)
Code
PSY22
Topic
Health Service Delivery & Process of Care
Topic Subcategory
Disease Management, Treatment Patterns and Guidelines
Disease
Systemic Disorders/Conditions