To explore cognitive burden perceptions among physicians with relation to case report writing. To understand impact of perceived workload on case report publication rates. And to identify infrastructure and AI-driven mechanisms to reduce cognitive burden among physicians in producing case reports and increasing publication.

Hunter Syndrome or Mucopolysaccharidosis II (MPS II) is a rare genetic disorder caused by decreased levels of a specific enzyme, iduronate-2-sulfatase. Lack of this enzyme causes buildup of large sugar molecules called glycosaminoglycans (GAGs). The build up of GAGs causes significant damage to the body and brain. Idursulfase-IT, an enzyme replacement therapy, was developed for the treatment of patients with Hunter Syndrome with cognitive impairment to help with the central nervous system manifestations of the disease. The purpose of this post-trial access program is so that patients with Hunter syndrome who previously received monthly administration of idursulfase-IT through participation in an earlier clinical research study can continue to receive it.

The purpose of this study is to understand the ways in which systemic sclerosis (SSc) develops and identify potential treatments. Because this study focuses on the interaction between macrophages and fibroblasts, both peripheral blood and skin will be necessary for completion of this work. Results from this work will provide the rational basis for the development of novel treatments for SSc patients.

You are being asked to participate in this research study because you have a type of tumor called a Central Nervous System (CNS) tumor, and you are scheduled to have surgery to remove this tumor. The study team wants to use left-over tumor samples from this surgery to study your tumor and test new ways to fight it.

The purpose of this study is to provide NCAA policymakers and member institutions with detailed information on the health and wellness of student-athletes. The information collected from NCAA member institutions around the country will be used to assess trends and design appropriate educational initiatives for student-athlete well-being

Sanfilippo syndrome Type A or mucopolysaccharidosis type IIIA (MPS IIIA) is a rare genetic disorder caused by the deficiency of the lysosomal enzyme sulfamidase. Lack of this enzyme causes buildup of large sugar molecules called glycosaminoglycans (GAGs) in the lysosomes which leads to cellular dysfunction. The buildup of GAGs causes significant damage to the body and brain. This study is a multicenter, Phase 1/2 study to assess the safety, tolerability, and efficacy of they study drug DNL126, an enzyme replacement therapy, to provide the missing enzyme to the body. Up to 28 participants with MPS IIIA will participate in the study across multiple study sites .

The purpose of this research study is to see what professional theaters in the United States are doing to address affordability concerns.

This study is comparing two approaches for monitoring and addressing symptoms among adult patients with kidney failure who are treated with hemodialysis. For the first approach patients use an electronic system twice a month to report their symptoms. The system sends alerts to their medical team at the dialysis clinic about the reported symptoms and gives suggestions about how to manage them. The system also provides reports that show patients and their medical team the reported symptoms over time. For the second approach patients complete a quality of life questionnaire that includes questions about symptoms once a year. The questionnaire does not have follow-up support like alerts, symptom management guidance, or reports. In addition, researchers will talk to patients, dialysis clinic personnel, and medical providers about their experiences using the electronic symptom monitoring system to learn about how to best use patient-reported outcome measures in dialysis care.

This study will identify and explore the various ways that archivists and librarians make LGBTQ archival materials accessible online and digitally and inquire about their experiences with material that has been mislabeled.

To further understand the perspectives and health literacy of parents of children with chronic medical conditions before their child transitions from pediatric to adult care