BackgroundThe use of lengthy, detailed, and complex informed consent forms (ICFs) is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in biomedical research.MethodsThis multi-center, cross-sectional, descriptive survey was conducted at 54 study sites in seven Asia-Pacific countries. A modified Likert-scale questionnaire was used to determine the importance of each element in the ICF among research participants of a biomedical study, with an anchored rating scale from 1 (not important) to 5 (very important).ResultsOf the 2484 questionnaires distributed, 2113 (85.1%) were returned. The majority of respondents considered most elements required in the ICF to be ‘moderately important’ to ‘very important’ for their decision making (mean score, ranging from 3.58 to 4.47). Major foreseeable risk, direct benefit, and common adverse effects of the intervention were considered to be of most concerned elements in the ICF (mean score = 4.47, 4.47, and 4.45, respectively).ConclusionsResearch participants would like to be informed of the ICF elements required by ethical guidelines and regulations; however, the importance of each element varied, e.g., risk and benefit associated with research participants were considered to be more important than the general nature or technical details of research. Using a participant-oriented approach by providing more details of the participant-interested elements while avoiding unnecessarily lengthy details of other less important elements would enhance the quality of the ICF.Electronic supplementary materialThe online version of this article (10.1186/s12910-018-0318-x) contains supplementary material, which is available to authorized users.

Somatic and germline mosaicism for an X-linked dominant mutation in PHEX may mimic autosomal dominant inheritance.

Two siblings with BFNC had a novel heterozygous missense mutation, p.R213W, in KCNQ2. This mutation may affect potassium gating, leading to neuronal excitability or convulsions in the patients. Furthermore, neither of the parents had the p.R213W mutation, indicating that it was a germ-line mutation. The possibility of recurrence of such a germ-line mutation in the next siblings should be explained during genetic counseling.

Type 2 Diabetes Mellitus (T2DM) is characterized by 2 times higher blood glucose and lipid profile than nondiabetic people. Several studies indicated that pancreatic β cell dysfunction due to dyslipidemia is an independent risk factor T2DM. Dyslipidemia on T2DM can lead pancreatic β cell dysfunction. Objective: This study aimed to determine the correlation between lipid profiles (triglyceride, total cholesterol, LDL, and HDL) with pancreatic β cell function (HOMA-β) in patients with T2DM. Methods: This research method is a crosssectional study of 50 patients with T2DM at Community Health Center (45-65 years old). Lipid profiles level were analized by glycerol-3-phosphate-oxidase (GPO) PAP method (Genius) and insulin level was analized by using ELISA. β cell function is measured using HOMA-β. Pearson Correlation test was used to assess the correlation between lipid profiles with HOMA-β (p value <0.05) Results: This study showed no significant relationship between triglyceride and HOMA-β (p= 0,430), total cholesterol with HOMA-β (p=0,717), LDL with HOMA-β (p=0,633), HDL with HOMA-β (p=0,754). There is no significant relationship between lipid profiles (triglyceride, total cholesterol, LDL, and HDL) and β cell function. For further research, it is recommended to examine other factors such as food intake by taking into account the drugs consumed.

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