HydroAssist™ will allow hydrocephalus patients to record and access their full hydrocephalus treatment history on their smartphones and tablets.
Bethesda, MD | October 22, 2015
The Hydrocephalus Association, the largest private funder of hydrocephalus research in the United States, announces the launch of HydroAssist™, a mobile app created by a team consisting of medical professionals in the Johns Hopkins Department of Neurology and Cincinnati Children’s Hospital Medical Center Department of Neurosurgery, patient representatives, and an award-winning mobile app developer. The app will allow hydrocephalus patients to record and access their full hydrocephalus treatment history on their smartphones and tablets, and is available to download for free for both Apple iOS and Android mobile devices.
Hydrocephalus, which affects more than 1 million Americans of all ages, is caused by an abnormal accumulation of cerebrospinal fluid in the brain. The only treatment requires brain surgery, and repeated surgeries are often needed due to high failure rates of the predominant treatment—the insertion of a medical device called a shunt into the brain.
“While caring for my patients with hydrocephalus and pseudotumor cerebri, I realized the lack of an easy system to track the shunt settings and surgeries my patients underwent. In an effort to assist both medical practitioners and patients alike, I decided to team up with my colleagues and the Hydrocephalus Association to develop a smartphone app,” stated Dr. Abhay Moghekar, neurologist and co-director of the Johns Hopkins Cerebral Fluid Center.
HydroAssist™ allow patients to manage their care in the most comprehensive way – a possibility that has never been realistic for hydrocephalus patients who tend to have an extensive medical file. HydroAssist™ features easy data entry of treatments, organization of multiple treatments, and a complete history sorted by procedure date. This information is then easily accessible and able to be shared in the case of an emergency when a patient is not being seen by their doctor or in their usual facility. For those living with hydrocephalus, the app will help mitigate the fear of travelling too far from their medical institutions for fear of an emergency and not having their medical history readily available at an unknown institution in order to receive prompt care. Time can be of the essence for patients with hydrocephalus to avert long-term brain damage resulting from an acute shunt failure.
“I believe that by empowering patients to become managers of their own medical histories with a little help from their physicians and technology, better care can be achieved even for patients that are not able to see the same provider every time,” stated Dr. Jesse Skoch, a pediatric neurosurgeon at Cincinnati Children’s Hospital, who joined the development team while finishing his residency at the University of Arizona.
The mobile app was tested by a focus group consisting of individuals living with hydrocephalus, parents, caregivers, and the staff of the Hydrocephalus Association, allowing for feedback and enhancements at each stage of development by the individuals who will be the users of the app. The team of developers includes Dr. Abhay Moghekar and Peter Dziedzic, MSc, of the Johns Hopkins Department of Neurology, Dr. Jesse Skoch of Cincinnati Children’s Hospital, the staff of the Hydrocephalus Association, and Brian Berg of MediaKube LLC, an award-winning mobile app developer in Phoenix, Arizona. The team is grateful for the hydrocephalus community’s involvement in the development of the mobile app and looks forward to continuing to enhance the app with user feedback in the future.
More About Hydrocephalus
Hydrocephalus is a chronic, life-threatening condition that can only be treated surgically. The predominant treatment is the insertion of a small tube, called a shunt, into the brain to drain excess cerebrospinal fluid. Shunts save lives but frequently malfunction, become infected or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries during the course of their lifetime and some individuals have more than 100 surgical procedures. Each surgical procedure brings the risk of unknown long term cognitive and health effects.
The Hydrocephalus Association, the largest advocacy group dedicated to hydrocephalus, is fighting on all fronts to improve the quality of life for people living with the condition. The Vision Dinner is meant to encourage more research, increase public awareness, inspire physicians to specialize in hydrocephalus, and to continue to guide and support people living with the condition.
About the Hydrocephalus Association
Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association is the nation’s largest and most widely respected organization dedicated to hydrocephalus. More than 60 percent of HA’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. The Hydrocephalus Association’s mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition. For more information, visit the Hydrocephalus Association website at www.hydroassoc.org or call (888) 598-3789.