Outcomes of patient self-referral for the diagnosis of several rare inherited kidney diseases.

PURPOSE: To evaluate self-referral from the Internet for genetic diagnosis of several rare inherited kidney diseases. METHODS: Retrospective study from 1996 to 2017 analyzing data from an academic referral center specializing in autosomal dominant tubulointerstitial kidney disease (ADTKD). Individuals were referred by academic health-care providers (HCPs) nonacademic HCPs, or directly by patients/families. RESULTS: Over 21 years, there were 665 referrals, with 176 (27%) directly from families, 269 (40%) from academic HCPs, and 220 (33%) from nonacademic HCPs. Forty-two (24%) direct family referrals had positive genetic testing versus 73 (27%) families from academic HCPs and 55 (25%) from nonacademic HCPs (P = 0.72). Ninety-nine percent of direct family contacts were white and resided in zip code locations with a mean median income of $77,316 ± 34,014 versus US median income $49,445. CONCLUSION: Undiagnosed families with Internet access bypassed their physicians and established direct contact with an academic center specializing in inherited kidney disease to achieve a diagnosis. Twenty-five percent of all families diagnosed with ADTKD were the result of direct family referral and would otherwise have been undiagnosed. If patients suspect a rare disorder that is undiagnosed by their physicians, actively pursuing self-diagnosis using the Internet can be successful. Centers interested in rare disorders should consider improving direct access to families.

Outcome findings of COVID-19 vaccine among 31 977 pregnant women in Indonesia.

OBJECTIVE: We provide an overview of the safety of messenger RNA and inactivated coronavirus disease 2019 (COVID-19) vaccine and monitoring of pregnant women after COVID-19 vaccination. The vaccine safety outcome profile is beneficial for further recommendations of COVID-19 vaccination in pregnancy. METHODS: This research was conducted as descriptive research. Sampling was performed using an online questionnaire to be filled out voluntarily and distributed to all pregnant women in Indonesia who received the COVID-19 vaccination. Data collection was performed and descriptive statistics were obtained. RESULTS: Among 31 977 pregnant women, 24 212 (75.7%) received the first dose, 7619 (23.8%) received the second dose, and 146 (4.5%) received the third dose of the COVID-19 vaccine. Sinovac vaccine is the most administered vaccine to pregnant women (27 122 [84%]). Most pregnant women (78.7%) who were vaccinated had no adverse effects after immunization, while the most reported adverse effects were mild symptoms. CONCLUSION: The current study contributed evidence that COVID-19 vaccination during pregnancy has minimal adverse effects. These findings may help pregnant women and healthcare providers to make informed decisions regarding vaccination.