Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey

Journals

1. Pfiester E, Braune K, Thieffry A, Ballhausen H, Gajewska K, O'Donnell S. Costs and underuse of insulin and diabetes supplies: Findings from the 2020 T1International cross-sectional web-based survey. Diabetes Research and Clinical Practice 2021;179:108996 View
2. Bukhari K, Malek R. Open-source automated insulin delivery systems for the management of type 1 diabetes during pregnancy. BMJ Case Reports 2021;14(9):e243522 View
3. Tornincasa V, Dixon D, Le Masne Q, Martin B, Arnaud L, van Dommelen P, Koledova E. Integrated Digital Health Solutions in the Management of Growth Disorders in Pediatric Patients Receiving Growth Hormone Therapy: A Retrospective Analysis. Frontiers in Endocrinology 2022;13 View
4. Thabit H, Lal R, Leelarathna L. Automated insulin dosing systems: Advances after a century of insulin. Diabetic Medicine 2021;38(12) View
5. Jansky B, Langstrup H. Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care. BioSocieties 2023;18(3):498 View
6. Patel R, Crabtree T, Taylor N, Langeland L, Gazis A, Mendis B, Wilmot E, Idris I. Safety and effectiveness of do‐it‐yourself artificial pancreas system compared with continuous subcutaneous insulin infusions in combination with free style libre in people with type 1 diabetes. Diabetic Medicine 2022;39(5) View
7. Braune K, Lal R, Petruželková L, Scheiner G, Winterdijk P, Schmidt S, Raimond L, Hood K, Riddell M, Skinner T, Raile K, Hussain S. Open-source automated insulin delivery: international consensus statement and practical guidance for health-care professionals. The Lancet Diabetes & Endocrinology 2022;10(1):58 View
8. O'Donnell S, Cooper D, Chen Y, Ballhausen H, Lewis D, Froment T, Anna Gajewska K, Tappe A, Skinner T, Cleal B, Braune K. Barriers to uptake of Open-Source automated insulin delivery Systems: Analysis of socioeconomic factors and perceived challenges of adults with type 1 diabetes from the OPEN survey. Diabetes Research and Clinical Practice 2023;197:110235 View
9. Schipp J, Skinner T, Holloway E, Scibilia R, Langstrup H, Speight J, Hendrieckx C. ‘We’re all on the same team’. Perspectives on the future of artificial pancreas systems by adults in Australia with type 1 diabetes using open‐source technologies: A qualitative study. Diabetic Medicine 2022;39(5) View
10. Mewes D, Wäldchen M, Knoll C, Raile K, Braune K. 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 2023;17(5):1304 View
11. Knoll C, Schipp J, O'Donnell S, Wäldchen M, Ballhausen H, Cleal B, Gajewska K, Raile K, Skinner T, Braune K. Quality of life and psychological well-being among children and adolescents with diabetes and their caregivers using open-source automated insulin delivery systems: Findings from a multinational survey. Diabetes Research and Clinical Practice 2023;196:110153 View
12. Speight J, Choudhary P, Wilmot E, Hendrieckx C, Forde H, Cheung W, Crabtree T, Millar B, Traviss‐Turner G, Hill A, Ajjan R. Impact of glycaemic technologies on quality of life and related outcomes in adults with type 1 diabetes: A narrative review. Diabetic Medicine 2023;40(1) View
13. de Wit M, Gajewska K, Goethals E, McDarby V, Zhao X, Hapunda G, Delamater A, DiMeglio L. ISPAD Clinical Practice Consensus Guidelines 2022: Psychological care of children, adolescents and young adults with diabetes. Pediatric Diabetes 2022;23(8):1373 View
14. Knoll C, Peacock S, Wäldchen M, Cooper D, Aulakh S, Raile K, Hussain S, Braune K. Real‐world evidence on clinical outcomes of people with type 1 diabetes using open‐source and commercial automated insulin dosing systems: A systematic review. Diabetic Medicine 2022;39(5) View
15. Morrison A, Chong K, Senior P, Lam A, Palumbo P. A scoping review of Do-It-Yourself Automated Insulin Delivery system (DIY AID) use in people with type 1 diabetes. PLOS ONE 2022;17(8):e0271096 View
16. Morrison A, Chong K, Lai V, Farnsworth K, Senior P, Lam A. Improved Glycemia and Quality of Life Among Loop Users: Analysis of Real-world Data From a Single Center. JMIR Diabetes 2022;7(4):e40326 View
17. Vallis M, Holt R. User‐driven open‐source artificial pancreas systems and patient‐reported outcomes: A missed opportunity?. Diabetic Medicine 2022;39(5) View
18. Huhndt A, Chen Y, O’Donnell S, Cooper D, Ballhausen H, Gajewska K, Froment T, Wäldchen M, Lewis D, Raile K, Skinner T, Braune K. Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey. Frontiers in Clinical Diabetes and Healthcare 2022;3 View
19. Braune K, Krug N, Knoll C, Ballhausen H, Thieffry A, Chen Y, O'Donnell S, Raile K, Cleal B. Emotional and Physical Health Impact in Children and Adolescents and Their Caregivers Using Open-source Automated Insulin Delivery: Qualitative Analysis of Lived Experiences. Journal of Medical Internet Research 2022;24(7):e37120 View
20. Crabtree T, Choudhary P, Lumb A, Hammond P, McLay A, Campbell F, Ng S, Wilmot E, Hussain S. Association of British Clinical Diabetologists, Diabetes Technology Network UK and Association of Children’s Diabetes Clinicians Survey of UK Healthcare Professional Attitudes Towards Open-Source Automated Insulin Delivery Systems. Diabetes Therapy 2022;13(2):341 View
21. Forlenza G, Lal R. Current Status and Emerging Options for Automated Insulin Delivery Systems. Diabetes Technology & Therapeutics 2022;24(5):362 View
22. Braune K, Knoll C, Cooper D. Open-Source-Systeme zur automatisierten Insulinabgabe. Die Diabetologie 2022;18(8):875 View
23. Braune K, Hussain S, Lal R. The First Regulatory Clearance of an Open-Source Automated Insulin Delivery Algorithm. Journal of Diabetes Science and Technology 2023;17(5):1139 View
24. Jansky B. Digitized Patients: Elaborative Tinkering and Knowledge Practices in the Open-source Type 1 Diabetes “Looper Community”. Science, Technology, & Human Values 2024;49(1):53 View
25. Jansky B. Disclosing Otherness: Situated Knowledges and the Politics of Ethnographic Approaches to the #WeAreNotWaiting Movement in Type 1 Diabetes and Beyond. Journal of Contemporary Ethnography 2024;53(1):51 View
26. Nir J, Rachmiel M, Fraser A, Lebenthal Y, Brener A, Pinhas-Hamiel O, Haim A, Stern E, Levek N, Ben-Ari T, Landau Z. Open-source automated insulin delivery systems (OS-AIDs) in a pediatric population with type 1 diabetes in a real-life setting: the AWeSoMe study group experience. Endocrine 2023;81(2):262 View
27. Halperin I, Chambers A, Covello L, Farnsworth K, Morrison A, Schuklenk U, Witteman H, Senior P, Bajaj H, Barnes T, Gilbert J, Honshorst K, Kim J, Lewis J, MacDonald B, Mackay D, Mansell K, Rabi D, Sherifali D. Do-It-Yourself Automated Insulin Delivery: A Position Statement. Canadian Journal of Diabetes 2023;47(5):381 View
28. Weiss R. Closed loop insulin delivery–Opportunities and limitations. Journal of Diabetes 2023;15(12):1103 View
29. Andersen T, Nunes F, Wilcox L, Coiera E, Rogers Y. Introduction to the Special Issue on Human-Centred AI in Healthcare: Challenges Appearing in the Wild. ACM Transactions on Computer-Human Interaction 2023;30(2):1 View
30. Marbouh D, Swarnakar V, Simsekler M, Antony J, Lizarelli F, Jayaraman R, Garza-Reyes J, Shokri A, Cudney E, Ellahham S. Healthcare 4.0 digital technologies impact on quality of care: a systematic literature review. Total Quality Management & Business Excellence 2023;34(15-16):2157 View
31. Downey L, O'Donnell S, Melvin T, Quigley M. A European regulatory pathway for Tidepool loop following clearance in the United States?. Diabetic Medicine 2024;41(4) View
32. Landau Z, Lebenthal Y, Mazor-Aronovitch K, Brener A, Levek N, Jacobi-Polishook T, Ben Ari T, Abiri S, Haim A, Nir J, Rachmiel M, Pinhas-Hamiel O. A comparison of the usage of an open-source automated insulin delivery system and the MiniMed™ 780 G system in children and adolescents with type 1 diabetes in real-world settings: the AWeSoMe study group. Endocrine 2024;84(3):943 View
33. Schütz A, Rami-Merhar B, Schütz-Fuhrmann I, Blauensteiner N, Baumann P, Pöttler T, Mader J. Retrospective Comparison of Commercially Available Automated Insulin Delivery With Open-Source Automated Insulin Delivery Systems in Type 1 Diabetes. Journal of Diabetes Science and Technology 2024 View
34. Cherubini V, Faragalli A, Arnaldi C, Bassi M, Bonfanti R, Patrizia Bracciolini G, Cardella F, Dal Bo S, Delvecchio M, Di Candia F, Franceschi R, Maria Galassi S, Gallo F, Graziani V, Iannilli A, Mameli C, Marigliano M, Minuto N, Monti S, Mozzillo E, Pascarella F, Predieri B, Rabbone I, Roppolo R, Schiaffini R, Tiberi V, Tinti D, Toni S, Scaramuzza A, Vestrucci B, Gesuita R. Glucometrics and device satisfaction in children and adolescents with type 1 diabetes using different treatment modalities: A multicenter real-world observational study. Diabetes Research and Clinical Practice 2024;210:111621 View
35. Forlenza G, Tabatabai I, Lewis D. Point-Counterpoint: The Need for Do-It-Yourself (DIY) Open Source (OS) AID Systems in Type 1 Diabetes Management. Diabetes Technology & Therapeutics 2024;26(10):689 View
36. Marsh J, Asan O, Kleinberg S. Perceived Penalties for Sharing Patient Beliefs with Health Care Providers. Medical Decision Making 2024;44(6):617 View
37. Braune K. Open-Source-AID-Systeme (AID: automatische Insulindosierung) bei Kindern und Jugendlichen. Die Diabetologie 2024;20(7):792 View
38. Liarakos A, Crabtree T, Wilmot E. Patient‐reported outcomes in studies of diabetes technology: What matters. Diabetes, Obesity and Metabolism 2024;26(S7):59 View
39. Roos T, Hermanns N, Groß C, Kulzer B, Haak T, Ehrmann D. Effect of automated insulin delivery systems on person-reported outcomes in people with diabetes: a systematic review and meta-analysis. eClinicalMedicine 2024;76:102852 View
40. DeClue C, Gonzalez M, Bradley A, Carranza-Leon B, Srivastava G. The Latest Trends in the Management of Type 1 and Type 2 Diabetes Mellitus. Endocrines 2024;5(4):566 View
41. ElSayed N, McCoy R, Aleppo G, Balapattabi K, Beverly E, Briggs Early K, Bruemmer D, Echouffo-Tcheugui J, Ekhlaspour L, Garg R, Khunti K, Lal R, Lingvay I, Matfin G, Pandya N, Pekas E, Pilla S, Polsky S, Segal A, Seley J, Stanton R, Bannuru R. 7. Diabetes Technology: Standards of Care in Diabetes—2025. Diabetes Care 2025;48(Supplement_1):S146 View
42. Cleal B, Chen Y, Wäldchen M, Ballhausen H, Cooper D, O'Donnell S, Knoll C, Krug N, Raile K, Ubben T, Tappe A, Lewis D, Willaing I, Skinner T, Braune K. 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 2025;27:e48406 View
43. Biester T, Berget C, Boughton C, Cudizio L, Ekhlaspour L, Hilliard M, Reddy L, Sap Ngo Um S, Schoelwer M, Sherr J, Dovc K. International Society for Pediatric and Adolescent Diabetes Clinical Practice Consensus Guidelines 2024: Diabetes Technologies – Insulin Delivery. Hormone Research in Paediatrics 2024;97(6):636 View
44. Poisson A, Vaduva P, Guenego A. Open source automated insulin delivery: State of play in France. Diabetes & Metabolism 2025;51(4):101644 View

Books/Policy Documents

1. Langstrup H, Jansky B. Reframing Algorithms. View
2. Dorris E, Cleere L, Kroll T. Building the Ecosystem for Engaged Research. View