Patient Registries: Patient Consent When Children Become Adults

Abstract

Registries are an enormously valuable resource for research, healthcare, quality measurement, comparative effectiveness measurement, public health, adverse event surveillance, and other purposes. Many registries concern conditions manifest in childhood and include participants who were entered without their knowledge on the basis of permission from their parents or guardians. Data in these registries may pose risks or concerns to participants and to the extent practicable they should be re-consented at adulthood for continuing registry participation. As registry participants are living longer and data sets are enriched, these risks may only increase. Further study of how registries work and how re-consent practices might be implemented is warranted.