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Objectives: This paper outlines the experience developing Addiction Medicine Practice-Based Research Network (AMNet), which promotes the adoption of patient-reported outcome measures (PROMs) and measurement-based care in outpatient addiction treatment practices and creates a platform for quality improvement and research., Methods: From August 2019 to July 2023, the AMNet team selected patient-reported outcome measures for implementation in the American Psychiatric Association's clinical data registry (PsychPRO), recruited addiction medicine providers, and collected PROMs data., Results: AMNet selected 12 PROMs for implementation in PsychPRO. Through July 2023, 1565 providers expressed interest, of whom 216 of the 929 eligible providers (23%) attended an onboarding call/webinar. Two hundred six providers (95%) from 54 practices returned Participation Agreements. Subsequently, 65 providers (32%) from 39 practices withdrew, resulting in 141 (68%) providers from 15 practices. From November 2020 to July 2023, 38 providers submitted PROMs data using 1 of 3 PsychPRO patient portals. Sixteen of the 53 providers (30%) who signed up for the initial portal collected data from 468 patients. As of July 2023, 83 of the 141 providers (59%) opted to submit PROMs data from their own portal or electronic health record., Conclusions: Next steps will include continued recruitment of providers, addressing barriers to data transfer and integrating data from providers' portals into the registry to create a platform for future research., Competing Interests: Conflicts of interest: Dr Schwartz has served as a consultant for Verily Life Sciences and as one of multiple principal investigators for a National Institute on Drug Abuse cooperative study that received free medications from Alkermes and Indivior. Dr Vocci has served as a consultant to Lyndra Therapeutics, Takeda Pharmaceuticals, and a group of generic buprenorphine manufacturers; he has received free medications from Alkermes and Braeburn for clinical studies, meals from Braeburn, and meals and travel reimbursements from IntraTab Labs, Lyndra Therapeutics, Takeda Pharmaceuticals, and a group of generic buprenorphine manufacturers. Dr Clarke has served on the Mental Health Landscape Project Advisory Panel for RAND, a project funded by Otsuka. The other authors report no financial relationships with commercial interests., (Copyright © 2024 American Society of Addiction Medicine.)

Introduction: The Management of Myelomeningocele Study, a.k.a. the MOMS trial, was published in 2011 in the New England Journal of Medicine. This prospective randomized controlled trial proved to be a milestone publication that provided definitive evidence that fetal surgery is a novel standard of care for select fetuses with spina bifida aperta (SB). The goal of our study is to assess whether our center can match these benchmark results., Materials and Methods: Our study was conducted according to the MOMS protocol using the same inclusion and exclusion criteria and looked at the same outcome parameters that were used in the MOMS trial. Zurich and MOMS results were compared., Results: We enrolled 20 patients between December 2010 and May 2015 all of whom underwent fetal surgery for SB. Among 51 different outcome variables, there were only 3 favorable (multiplicity-adjusted) significant differences (gestational age at birth, hindbrain herniation, and psychomotor development). There were no statistically significant differences regarding any other parameters., Conclusion: Our findings confirm that rigorous apprenticeship, training, and comprehensive prospective data collection enable centers like the Zurich Center for Fetal Diagnosis and Therapy to achieve benchmark results for open fetal surgery for myelomeningocele and myeloschisis. These results justify the existence and continuation of our program. Outcome documentation is an essential element of quality management. It is medically and ethically fundamental for fetal medicine and surgery centers offering high-end innovative medical care., (© 2019 S. Karger AG, Basel.)

Objective: The majority of patients counseled for prenatal open spina bifida repair (SBR) do not undergo fetal surgery. The aim of this study was to analyze the reasons for this phenomenon., Materials and Methods: The data of the first 160 patients seeking counseling or referred to the Zurich Center for Fetal Diagnosis and Therapy for prenatal SBR between December 2010 and March 2017 were retrospectively analyzed., Results: A total of 104 (65%) patients did not undergo prenatal SBR. Of this subgroup, 52% met the exclusion criteria, 35% decided to terminate pregnancy, 4% chose to continue pregnancy without fetal intervention, and 3% sought care in other European centers. In 6%, data about the ensuing course of pregnancy were not recorded. The main exclusion criteria were delayed presentation (30%), absence of hindbrain herniation (28%), and concomitant spinal anomalies (17%)., Conclusion: The high percentage of patients not qualifying for prenatal SBR underscores the necessity of a standard evaluation of every single patient at a qualified referral center. To allow a higher proportion of women carrying a fetus with open spina bifida to be timely and correctly informed about a potential fetal intervention, much more effort is mandatory to spawn correct, objective, and understandable information among all groups of people potentially exposed to this topic., (© 2018 S. Karger AG, Basel.)