Harnessing Internet Search Data as a Potential Tool for Medical Diagnosis: Literature Review.

Background: Access to accurate medical diagnosis has been hindered by socioeconomic disparities, limited availability of specialized medical professionals, and lack of patient education, among other factors. Inequities in access to high-quality healthcare services exacerbate these challenges, often leading to disparities in health outcomes. Missed or inaccurate diagnoses can lead to delayed or unnecessary treatments, risking worsening of the condition.

Practical Approaches and Knowledge Gaps in the Care for Children With Leukodystrophies.

Leukodystrophies are a group of neurodegenerative genetic disorders that affect approximately 1 in 7500 individuals. Despite therapeutic progress in individual leukodystrophies, guidelines in neurologic care are sparse and consensus among physicians and caregivers remains a challenge. At patient advocacy meetings hosted by Hunter's Hope from 2016-2018, multidisciplinary experts and caregivers met to conduct a literature review, identify knowledge gaps and summarize best practices regarding neurologic care.