Johnson SB. Psychological impact of screening and prediction in type 1 diabetes. Curr Diab Rep. 2011;11(5):454–9. https://doi.org/10.1007/s11892-011-0208-9.

Article  PubMed  Google Scholar 

Tosur M, Onengut-Gumuscu S, Redondo MJ. Type 1 diabetes genetic risk scores: history, application and future directions. Curr Diab Rep. 2025;25:22. https://doi.org/10.1007/s11892-025-01575-5.

Article  PubMed  Google Scholar 

Haller MJ, Bell KJ, Besser REJ, Casteels K, Couper JJ, Craig ME, et al. ISPAD clinical practice consensus guidelines 2024: Screening, staging, and strategies to preserve beta-cell function in children and adolescents with type 1 diabetes. Horm Res Paediatr. 2024;97:529–45. https://doi.org/10.1159/000543035.

Article  CAS  PubMed  Google Scholar 

Phillip M, Achenbach P, Addala A, Albanese-O’Neill A, Battelino T, Bell KJ, et al. Consensus guidance for monitoring individuals with islet autoantibody-positive pre-stage 3 type 1 diabetes. Diabetes Care. 2024;47(8):1276–98. https://doi.org/10.1007/s00125-024-06205-5.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Insel RA, Dunne JL, Atkinson MA, Chiang JL, Dabelea D, Gottlieb PA, et al. Staging for presymptomatic type 1 diabetes: a scientific statement of JDRF, the endocrine Society, and the American diabetes association. Diabetes Care. 2015;38(10):1964–74. https://doi.org/10.2337/dc15-1419.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Evans-Molina C, Oram RA. Teplizumab approval for type 1 diabetes in the USA. Lancet Diabetes Endocrinol. 2023;11(2):76–7. https://doi.org/10.1016/S2213-8587(22)00391-6.

Article  CAS  PubMed  Google Scholar 

O’Donnell HK, Rasmussen CG, Dong F, Simmons KM, Steck AK, Frohnert B, et al. Anxiety and risk perception in parents of children identified by populations screening as high risk for type 1 diabetes. Diabetes Care. 2023;46(12):2155–61. https://doi.org/10.2337/dc23-0350.

Article  PubMed  Google Scholar 

Ziegler A, Kick K, Bonifacio E, Haupt F, Hippich M, Dunstheimer D, et al. Yield of a public health screening of children for islet autoantibodies in Bavaria. Ger JAMA. 2020;323(4):339–51. https://doi.org/10.1001/jama.2019.21565.

Article  CAS  Google Scholar 

Bell KJ, Brodie S, Couper JJ, Colman P, Davis E, Deedet G, et al. Protocol for the Australian type 1 diabetes national screening pilot: assessing the feasibility and acceptability of three general population screening models in children. Diabet Med. 2024;41(11):e15419. https://doi.org/10.1111/dme.15419.

Article  PubMed  Google Scholar 

Quinn LM, Shukla D, Greenfield SM, Barrett T, Garstang J, Boardman F, et al. Early surveillance for autoimmune diabetes: protocol for a qualitative study of general population and stakeholder perspectives on screening for type 1 diabetes in the UK (ELSA 1). BMJ Open Diabetes Res Care. 2022;10(2):e002750. https://doi.org/10.1136/bmjdrc-2021-002750.

Article  PubMed  PubMed Central  Google Scholar 

Oron T, Cortez FJ, Shtaif B, Robinson PV, Yackobovitch-Gavan M, Tandel D, et al. Detection of islet autoantibodies in whole blood by antibody detection by agglutination-PCR (ADAP) technology is sensitive and suitable for general population screening programs. Pediatr Diabetes. 2024. https://doi.org/10.1155/2024/4238394. Article ID 4238394.

Article  PubMed  PubMed Central  Google Scholar 

American Diabetes Association Professional Practice Committee. 2. Diagnosis and classification of diabetes: Standards of Care in Diabetes-2025. Diabetes Care 2025;48(Suppl1):S27-S49. https://doi.org/10.2337/dc25-S002

Jacobson LM, Atkinson MA, Sosenko JM. Time to reframe the disease staging system for type 2 diabetes. Lancet Diabetes Endocrinol. 2024;12:924–33. https://doi.org/10.1016/S2213-8587(24)00239-0.

Article  Google Scholar 

Tluczek A, Ersig A, Lee S. Psychosocial issues related to newborn screening: a systematic review and synthesis. Int J Neonatal Screen. 2022;8(4):53. https://doi.org/10.3390/ijns8040053.

Article  PubMed  PubMed Central  Google Scholar 

Khan RK, Misra R, Shawley-Brzoska S, Wen S. Predictors of diabetes risk perception among college students. J Am Coll Health. 2022;70(6):1803–9. https://doi.org/10.1080/07448481.2020.1825222.

Article  PubMed  Google Scholar 

Daack-Hirsch S, Shah LL, Jones K, Rocha B, Doerr M, Gabitzsch E, et al. All things considered, my risk for diabetes is medium: A risk personalization process of familial risk for type 2 diabetes. Health Expect. 2020;23:169–81. https://doi.org/10.1111/hex.12986.

Article  PubMed  Google Scholar 

Kim C, McEwen LN, Piette JD, Goewey J, Ferrara A, Walker EA. Risk perception for diabetes among women with histories of gestational diabetes mellitus. Diabetes Care. 2007;30(9):2281–6. https://doi.org/10.2337/dc07-0618.

Article  PubMed  Google Scholar 

de la Haye K, Whitted C, Koehly L. Formative evaluation of the families SHARE disease risk tool among low-income African Americans. Pub Health Genomics. 2021;24:280–90. https://doi.org/10.1159/000517309.

Article  Google Scholar 

Swartling U, Lynch K, Smith L, Johnson SB. Parental estimation of their child’s increased type 1 diabetes risk during the first 2 years of participation in an international observational study: results from the TEDDY study. J Empir Res Hum Res Ethics. 2016;11(2):106–14. https://doi.org/10.1177/1556264616648589.

Article  PubMed  PubMed Central  Google Scholar 

Kerruish NJ, Healey DM, Gray AR. Psychosocial effects in parents and children 12 years after newborn genetic screening for type 1 diabetes. Eur J Hum Genet. 2017;25:397–403. https://doi.org/10.1038/ejhg.2016.190.

Article  PubMed  PubMed Central  Google Scholar 

O’Donnell HK, Tamura R, Smith L, Driscoll K, Melin J, Simmons K, Johnson SB, the TEDDY Study Group. Child Understanding of risk for type 1 diabetes: the TEDDY study. Clin Diabetes April. 2025. https://doi.org/10.2337/cd24-0080.

Article  Google Scholar 

Kerruish NJ. Parents’ experiences of newborn screening for genetic susceptibility to type 1 diabetes. J Med Ethics. 2011;37:348–53. https://doi.org/10.1136/jme.2010.039206.

Article  PubMed  Google Scholar 

Whittmore R, Jaser S, Chao A, Jang M, Grey M. Psychological experience of parents of children with type 1 diabetes: a systematic mixed-studies review. Diabetes Educ. 2012;38(4):562–79. https://doi.org/10.1177/0145721712445216.

Article  Google Scholar 

Houben J, Janssens M, Winkler C, Besser REJ, Dzygalo K, Fehn A, et al. The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study. Pediatr Diabetes. 2022;23:1707–16. 10.111/pedi.13448.

Article  PubMed  Google Scholar 

Wade CH, Wilfond BS, McBride DM. Effects of genetic risk information on children’s psychosocial well-being: a systematic review of the literature. Genet Med. 2010;12(6):317–26. https://doi.org/10.1097/GIM.0b013e3181de695c.

Article  PubMed  Google Scholar 

Wells GA, Russell AS, Haraoui B, Bissonnette R, Ware C. Validity of quality of life measurement tools-from generic to disease-specific. J Rheum. 2011;88(Suppl):2–6. https://doi.org/10.3899/jrheum.110906.

Article  Google Scholar 

Hood KK, Johnson SB, Baughcum AE, She JX, Schatz D. Maternal understanding of infant diabetes risk: differential effects of maternal anxiety and depression. Genet Med. 2006;8(10):665–70. https://doi.org/10.1097/gim.0000237794.24543.4d.

Article  PubMed  Google Scholar 

Driscoll KA, Melin J, Lynch KF, Smith LB, Johnson SB. SAI-CH-6: development of a short form of the state anxiety inventory for children at-risk for type 1 diabetes. J Pediatr Psychol. 2023;48:861–9. https://doi.org/10.1093/jpepsy/ksad057.

Article  PubMed  PubMed Central  Google Scholar 

Johnson SB, Lynch KF, Roth R, Schatz D, the TEDDY Study Group. My child is islet autoantibody positive: impact on parental anxiety. Diabetes Care. 2017;40(9):1167–72. https://doi.org/10.2337/dc17-0166.

Article  PubMed  PubMed Central  Google Scholar 

Roth R, Lynch K, Lernmark B, Baxter J, Simell T, Smith L, et al. Maternal anxiety about a child’s diabetes risk in the TEDDY study: the potential role of life stress, postpartum depression, and risk perception. Pediatr Diabetes. 2015;16(4):287–98. https://doi.org/10.1111/pedi.12168.

Article  PubMed  Google Scholar 

Smith LB, Liu X, Johnson SB, et al. Family adjustment to diabetes diagnosis in children: can participation in a study on type 1 diabetes genetic risk be helpful? Pediatr Diabetes. 2018;19(5):1025–33. https://doi.org/10.1111/pedi.12674.

Article  PubMed