Beneufit Creates Research Applications That Capture The Power Of Real-World Data
A global patient registry is needed for FOXG1 syndrome caregivers, patients, doctors, and scientists, to better understand FOXG1 syndrome. It will help scientists better understand FOXG1 syndrome so they can develop treatments and hopefully a cure.
Caregivers, physicians and scientists will learn about drugs and therapies for symptoms, like seizures, that are most effective for children with a similar mutation to your child.
This patient registry is approved by the Stanford Institutional Review Boards and managed by Stanford Neurogenomics.
FOXG1 Research Foundation patient registry screenshots. On the left is the developmental data input page and on the right is the dashboard with patient access and real-time registry insight charts.
Despite advances in spinal oncology, research in patient-based prognostic calculators for metastatic spine disease is lacking. Much of the literature in this area investigates the general predictive accuracy of scoring systems in heterogeneous populations, with few studies considering the accuracy of scoring systems based on patient specifics such as type of primary tumor.
The study which inspired this site is one of the largest studies comparing the accuracy of multiple scoring systems, the only comprehensive study to include nine scoring systems, and the only study to compare primary tumor-specific prognostic accuracy for this many scoring systems. Clinicians may use calculator tables to determine the most accurate scoring system for a specific patient, based on primary tumor etiology and prognosis.
Spinal Oncology study screenshots. On the left is the study dashbard with real-time study metrics and on the right a view of individual patient survivability index inputs and results.
Recent research has found that walking regularly can help improve memory, attention, and decision-making, and even reduce the risk of cognitive decline. The Boston Roybal Center (RALI Boston) and Lifespan Lab at Brandeis University's study investigates the use of a walking app to increase physical activity.
The RALI Boston StepMate study involves using an iPhone app built on Apple’s ResearchKit framework to keep track of daily steps as well as the distance and time of walks. The study also involves filling out questionnaires and communicating with the research team via the app, email, and telephone. The study can be completed entirely via the phone and internet; there is no need to come to the lab.
StepMate study app and dashboard screenshots. Starting from the left the StepMate home screen with step goal indicator, mood and energy level selectors and study administrators dashbaord with real-time study metrics.
A free smart-phone app, developed by Johns Hopkins researchers to help screen for a rare but life-threatening liver disorder in babies, is part of a trial designed to learn whether information delivered by the app, known as PoopMD+, ultimately leads to better diagnosis and treatment.
The first line of treatment for biliary atresia, which causes nearly half of all cases of pediatric end-stage liver disease in the U.S., involves surgery to repair bile ducts and restore bile flow to prevent irreversible liver damage. The best outcomes are seen when the surgery is done in the first month of life. However, this critical window is often missed, researchers say, with time to diagnosis in the U.S. averaging 70 days.
After an initial use, users will automatically receive a questionnaire four weeks later asking what they did with the generated information: Did they go to the doctor? If so, what did the doctor do? Did the app’s analysis cause anxiety, even if it suggested a child’s stools were normal?
PoopMD+ study app screenshots showing from left to right, photo of poop in diaper, selecting the area to analyze, viewing the Pale diagnosis and sharing the diagnosis via email.