Hao Zou, Jianrong Liu, Dongxu Jiang, Linlin Hou, Weiliang Wang, Linlin Zhang
The Effect of Health Literacy on Disease Management Self-Efficacy in Chronic Disease Patients: The Mediating Effects of Social Support and the Moderating Effects of Illness Perception
Patient preference and adherence
around 2000 children born uk per year neurodevelopmental genetic syndrome significantly increased morbidity mortality often little known expected growth phenotypes children parents responded setting social media groups generate data given significant clinical evidence gaps research attempt identify growth patterns developmental profiles phenotypes providing data longterm medical educational outcomes guide clinicians investigate monitor treat symptoms search additional alternative diagnoses observational multicentre cohort study recruiting march 2023 february 2026 children aged 6 months 16 years pathogenic likely pathogenic variant specified gene eligible children identified national health service via selfrecruitment parents carers complete questionnaire baseline 1 year recruitment named clinician cases clinical geneticist complete clinical proforma provide data recent clinical assessment qualitative interviews undertaken subset parents partway study growth developmental milestone curves generated decipher website httpsdeciphergenomicsorg 5 children genetic syndrome least 10 groups expected results presented national international conferences concerning care children genetic syndromes results also submitted peer review publication