Leading Science With Lived Experience

Larrauri, Carlos A.; Staglin, Brandon

doi:10.1093/schbul/sbab147

Cited by 3 publications

(2 citation statements)

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“…The perspective of individuals with lived experience has been included throughout the AMP SCZ project, including the conception, protocol design, and ongoing conduct of the study. 25 The co-chair of the AMP SCZ Steering Committee brings lived experience to the study, which is further supported by advocacy group members who serve on the AMP SCZ Steering Committee. Together, they supported the development of the AMP SCZ research plan and reviewed the study protocol yielding insight into assessment measures and perceived burden from the perspective of the study participant.…”

Section: Introductionmentioning

confidence: 99%

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Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ): Rationale and Study Design of the Largest Global Prospective Cohort Study of Clinical High Risk for Psychosis

Wannan,

Nelson,

Addington

et al. 2024

Schizophrenia Bulletin

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This article describes the rationale, aims, and methodology of the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ). This is the largest international collaboration to date that will develop algorithms to predict trajectories and outcomes of individuals at clinical high risk (CHR) for psychosis and to advance the development and use of novel pharmacological interventions for CHR individuals. We present a description of the participating research networks and the data processing analysis and coordination center, their processes for data harmonization across 43 sites from 13 participating countries (recruitment across North America, Australia, Europe, Asia, and South America), data flow and quality assessment processes, data analyses, and the transfer of data to the National Institute of Mental Health (NIMH) Data Archive (NDA) for use by the research community. In an expected sample of approximately 2000 CHR individuals and 640 matched healthy controls, AMP SCZ will collect clinical, environmental, and cognitive data along with multimodal biomarkers, including neuroimaging, electrophysiology, fluid biospecimens, speech and facial expression samples, novel measures derived from digital health technologies including smartphone-based daily surveys, and passive sensing as well as actigraphy. The study will investigate a range of clinical outcomes over a 2-year period, including transition to psychosis, remission or persistence of CHR status, attenuated positive symptoms, persistent negative symptoms, mood and anxiety symptoms, and psychosocial functioning. The global reach of AMP SCZ and its harmonized innovative methods promise to catalyze the development of new treatments to address critical unmet clinical and public health needs in CHR individuals.

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Section: Introductionmentioning

confidence: 99%

“…Also, they present at AMP SCZ consortium meetings and ensure that the patient voice is incorporated in the project priorities to bridge the gap between science and real-world needs. 25 …”

Section: Introductionmentioning

confidence: 99%

Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ): Rationale and Study Design of the Largest Global Prospective Cohort Study of Clinical High Risk for Psychosis

Wannan,

Nelson,

Addington

et al. 2024

Schizophrenia Bulletin

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Messiah or pariah? Psychosis, science, and finding meaning in lived experience

Larrauri

2024

Schizophr

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Diagnosed with adult-onset schizophrenia shortly after his 24th birthday, the author transitioned from a perceived state of spiritual awakening to grappling with one of the most stigmatized illnesses. Initially, he internalized societal stereotypes, envisioning a future as a marginalized individual. However, with support from family and providers, he re-engaged with school and work, fostering an expectation of normalcy despite early struggles. The author discusses his psychotic episodes, marked by rapture, absurdity, and terror, in light of current neurobiological literature and mechanistic hypotheses such as salience network dysfunction and impaired corollary discharge. Over time, he sought to reconcile these intense memories with scientific understanding to find meaning in his lived experience. As co-chair of the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ), he advocates for an integrative approach combining scientific inquiry and lived experience. This perspective not only fosters a more accurate comprehension of psychosis but may also enhance research and care.

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National Institute of Mental Health Support for Cognitive Treatment Development in Schizophrenia: A Narrative Review

Heinssen,

Morris,

Sherrill

2024

Schizophrenia Bulletin

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For several decades the National Institute of Mental Health (NIMH) has supported basic and translational research into cognitive impairment in schizophrenia. This article describes the Institute’s ongoing commitment to cognitive assessment and intervention research, as reflected by three signature initiatives—Measurement and Treatment Research to Improve Cognition in Schizophrenia; Cognitive Neuroscience Treatment Research to Improve Cognition in Schizophrenia; and Research Domain Criteria—and related funding announcements that span basic experimental studies, efficacy and comparative effectiveness trials, and implementation research designed to promote cognitive healthcare in real-world treatment settings. We discuss how trends in science and public health policy since the early 2000s have influenced NIMH treatment development activities, resulting in greater attention to (1) inclusive teams that reflect end-user perspectives on the utility of proposed studies; (2) measurement of discrete neurocognitive processes to inform targeted interventions; (3) clinical trials that produce useful information about putative illness mechanisms, promising treatment targets, and downstream clinical effects; and (4) “productive urgency” in pursuing feasible and effective cognitive interventions for psychosis. Programs employing these principles have catalyzed cognitive measurement, drug development, and behavioral intervention approaches that aim to improve neurocognition and community functioning among persons with schizophrenia. NIMH will maintain support for innovative and impactful investigator-initiated research that advances patient-centered, clinically effective, and continuously improving cognitive health care for persons with psychotic disorders.

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Leading Science With Lived Experience

Cited by 3 publications

References 1 publication

Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ): Rationale and Study Design of the Largest Global Prospective Cohort Study of Clinical High Risk for Psychosis

Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ): Rationale and Study Design of the Largest Global Prospective Cohort Study of Clinical High Risk for Psychosis

Messiah or pariah? Psychosis, science, and finding meaning in lived experience

National Institute of Mental Health Support for Cognitive Treatment Development in Schizophrenia: A Narrative Review

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