ArticleJournal of medical Internet research2021
Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey.
Article in Journal of medical Internet research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
31 citing papers in PubMed, 1 synthesis or guideline pooled it, 62 citations in OpenAlex.
- International Society for Pediatric and Adolescent Diabetes Clinical Practice Consensus Guidelines 2024: Diabetes Technologies - Insulin Delivery.Hormone research in paediatrics · 2024Guideline
- Randomised Controlled Multicentre Trial to Investigate the Effectiveness of a Mobile Artificial Intelligence Solution for Diabetes Adapted Care: The MELISSA Trial Protocol.Diabetes, obesity & metabolism · 2026Article
- Review
- Navigating the complexities of digital health technology implementation: a scoping review of barriers and facilitators.Implementation science communications · 2026Review
- Fully closed-loop systems: can people with type 1 diabetes just do it? Insights from open-source systems.Diabetologia · 2026Review
- Transformations in Diabetes Care: Lessons From Commons-Based, Peer-Produced Citizen Science.Sociology of health & illness · 2026Article
- Sleep-AID: a cross-sectional analysis of subjective sleep quality, psychosocial measures and real-world glycemic outcomes in people with diabetes using automated insulin delivery systems.Sleep advances : a journal of the Sleep Research Society · 2026Article
- 7. Diabetes Technology: Standards of Care in Diabetes-2026.Diabetes care · 2026Review
- Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives.Journal of medical Internet research · 2025Article
- 7. Diabetes Technology: Standards of Care in Diabetes-2025.Diabetes care · 2025Review
- Patient-reported outcomes in studies of diabetes technology: What matters.Diabetes, obesity & metabolism · 2024Review
- Effect of automated insulin delivery systems on person-reported outcomes in people with diabetes: a systematic review and meta-analysis.EClinicalMedicine · 2024Article
- Diabetes Technology Meeting 2023.Journal of diabetes science and technology · 2024Article
- Perceived Penalties for Sharing Patient Beliefs with Health Care Providers.Medical decision making : an international journal of the Society for Medical Decision Making · 2024Article
- Closed loop insulin delivery-Opportunities and limitations.Journal of diabetes · 2023Article
- The First Regulatory Clearance of an Open-Source Automated Insulin Delivery Algorithm.Journal of diabetes science and technology · 2023Article
- Variability of Glycemic Outcomes and Insulin Requirements Throughout the Menstrual Cycle: A Qualitative Study on Women With Type 1 Diabetes Using an Open-Source Automated Insulin Delivery System.Journal of diabetes science and technology · 2023Article
- Observational
- Impact of glycaemic technologies on quality of life and related outcomes in adults with type 1 diabetes: A narrative review.Diabetic medicine : a journal of the British Diabetic Association · 2023Review
- ISPAD Clinical Practice Consensus Guidelines 2022: Psychological care of children, adolescents and young adults with diabetes.Pediatric diabetes · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 8 institutions in 4 countries.
Funding
Abstract
backgroundAutomated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.
objectiveThis study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID.
methodsA cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes.
resultsOf 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child's sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child's life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA
conclusionsThese results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/15368.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.