{"doi":"10.1111/jgs.18803","title":"The <scp>NIA IMPACT</scp> Collaboratory: History, impact, challenges, and the future of conducting <scp>ePCTs</scp> to improve dementia care","abstract":"In recognition of the 50th anniversary of the National Institute on Aging (NIA), we commemorate the NIA's response to the charge from Congress to identify effective and comprehensive programs to meet the urgent and complex public health needs of Americans impacted by Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD), a group of irreversible and progressive brain disorders that destroy a person's memory and thinking skills. Currently, more than 6 million people in the United States are living with ADRD.1 By 2050, 13 million Americans are projected to live with the disease, overwhelming care partners and healthcare systems, and costing the nation nearly $1 trillion dollars.1 People living with dementia (PLWD) are at high risk of receiving uncoordinated and poor-quality care, ultimately leading to adverse health outcomes, poor quality of life, and misuse of resources.1-3 Given the challenges with detection and diagnosis, intersecting with health disparities, the proportion of Americans impacted by AD/ADRD is likely undercounted and underreported.4 Still, according to the Centers for Disease Control and Prevention, while deaths from other common diseases, such as heart disease and cancer, have declined, deaths from AD/ADRD are increasing in every race, sex, and ethnicity category.4 The Alzheimer's Association reports that one in every three older adults dies with a diagnosis of AD/ADRD in the United States.1 Until recently, advances in AD/ADRD were disproportionate to the magnitude of this growing public health crisis. For example, the majority of drug trials for AD/ADRD do not show positive results,5 and the adoption of promising non-drug interventions into routine clinical practice has been stymied by the lack of research evaluating their effectiveness when implemented under real-world conditions in busy everyday healthcare systems (HCS).3 Embedded pragmatic clinical trials (ePCTs) of non-drug interventions have the potential to generate high-quality evidence to inform decisions about dementia care interventions that are effective in the real world by connecting what have traditionally been two siloed worlds, scientific research and actual healthcare delivery. We commend the NIA for emphasizing ePCTs of non-pharmacological approaches in HCS as part of a multi-faceted national strategy to rethink clinical trials and advance progress in dementia care. In 2012, the National Institutes of Health (NIH) invested in infrastructure via the NIH Pragmatic Trials Collaboratory to strengthen the national capacity to conduct ePCTs in partnership with HCS.3 Leveraging this foundation and lessons learned from a 2017 NIA conference on the “State of the Science for Pragmatic Trials of Non-Pharmacological Interventions for Persons with Dementia,”6 which concluded that conducting ePCTs with PLWD and their CPs had special considerations that merited a focused and coordinated initiative, the NIA announced a request for applications for a dementia-focused Collaboratory.3 This resulted in a cooperative agreement (U54) of the National Institute on Aging (NIA) IMbedded Pragmatic Alzheimer's disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory.3 The mission of IMPACT is to build the nation's capacity to conduct ePCTs of interventions for PLWD and their CPs.3 Unlike traditional clinical trials that typically test interventions in well-controlled, ideal environments, and conditions, ePCTs are designed to inform clinical and policy-level decisions by testing whether an intervention actually works when it is embedded into everyday healthcare settings under, often messy, real-world conditions. As such, ePCTs to improve dementia care have unique challenges. For example, investigators must develop competencies in brokering relationships with collaborating HCS. With the methodology of ePCTs still evolving, investigators must learn how to prioritize scientific rigor and health equity, while balancing complex","journal":"Journal of the American Geriatrics Society","year":2024,"id":455355,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":6,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9593,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2024-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":312977,"name":"Susan L. Mitchell","orcid":null,"position":1,"is_corresponding":false},{"id":270249,"name":"Ellen P. McCarthy","orcid":"0000-0003-1705-6249","position":2,"is_corresponding":false},{"id":379226,"name":"Vincent Mor","orcid":"0000-0003-0084-1267","position":3,"is_corresponding":false},{"id":584511,"name":"Jill Harrison","orcid":"0000-0001-6194-5452","position":0,"is_corresponding":true}],"reference_count":7,"raw_metadata":null,"created_at":"2026-07-19T02:03:17.458329Z","pmid":"38362903","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}