Abstract
Recent research into the effectiveness of abstinence-based substance use disorder (SUD) treatment indicates that there has not been a substantial improvement since the Drug Abuse Treatment Outcome Study research in 1993. Research into medication-supported treatments for SUD are hindered by a dearth of real-world longitudinal outcome studies. Patient registries have dramatically improved survival rates in many diseases by providing researchers with longitudinal data on a broad spectrum of patients undergoing a variety of treatments. Policy prescription: We recommend the creation of a national registry for patients receiving treatment for SUD akin to the Surveillance, Epidemiology, and End Results Program established in 1971 to track cancer patient outcomes. One option would be to expand the data currently being collected in the Treatment Episode Data Set (TEDS) to include all nonpublicly funded treatment and to allow for longitudinal tracking of deidentified individuals. Information on medication use and deaths could be kept up to date through integrations with state-wide death registries and Prescription Drug Monitoring Programs. The TEDS dataset already undergoes extensive data deidentification to make sure individuals cannot be identified prior to releasing the admissions and discharge datasets to researchers. Once longitudinal tracking is available, even more stringent deidentification will be necessary, and access to the dataset would be restricted to public health researchers. The development of a registry of individuals undergoing treatment for SUD can be expected to enhance our understanding of the progression of the disease and the relative effectiveness of different treatment modalities for patients with different drug use histories and characteristics.
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