Neurofibromatosis (NF), which includes NF1 and NF2, is the most common genetic mutation and affects about 1 in 3,500 people. Its phenotpyic expression is protean and can involve the brain, spine, peripheral nerves, skin, bones, eyes, GI system, and a variety of other tissues and organs to varying degrees from mild to life-threatening. Clinical symptoms can include pain, weakness, numbness, hearing and visual loss, changes in GI function, abnormalities in bone growth, to mention the most common. As a result, NF is one of the most challenging conditions to evaluate and treat, either medically or surgically. Although special NF clinics and support groups exist, it is still often a challenge for patients and their families to receive pertinent information and optimal care. Barriers include money, time, travel distance, and often insufficient information on the part of both patients and health care professionals. One solution would be to create an Apple App that not only provides comprehensive clinical and scientific information on the various type of NF, but also lists available medical and treatment resources, as well as facilitates people with NF and their families to exchange information gained from their personal experiences which often involve trial and error.
We propose to deliver a social mobile App aimed at providing a tool for patients already diagnosed with NF so that they can track their symptoms and findings, as well as response to any ongoing treatmets. It will also allow NF patients to interact with other people diagnosed with NF using other social media platforms such as Twitter and Facebook. A question and answer format will be provided which will allow patients and their families to ask specific questions not covered by the App. NF patients can also receive updates on new treatments or clinical trials. NF patients can also share their medical conditions with family members and/or health professionals as they choose in a regulatory compliant manner. We envision also having an associated UCSF web site that will provide general information on the disease and its clinical manifestations; what a thorough clinical workup involves and how a definitive diagnosis is made using state of the art genetic and clinical tools; and specific treatments for various problems. The App itself will evolve over time in response to feedback from its users. In particular the types of NF clinical problems encountered will increase over time with use of the NF App.
The NF App will expand on UCSF's mission to provide the best care possible to the most people by increasing access to important medical information and treatments as well as available resources. It will build upon the mission of the RAS Clinic and newly created NF Clinic at UCSF.
High level project plan:
- Design User Interface for the App (2 weeks)
- Collect list of NF conditions with their associated symptoms and findings to be used as a starting point wtihin the app (2 weeks)
- Leverage OpenPath (http://www.ucsfopenpath.org) to develop the initial version of the App (2 weeks)
- Setup and deploy servers and database to support storage of NF clincal conditions and their associated symptoms and findings in a secure manner (1 week)
- Collect content to be used on the webiste. We will use UCSF Radiology Website template for the site. (3 weeks)
- Plan to pilot the use of this app with patients seen in UCSF NF Clinic (1 week)
- Work with http://www.nfnetwork.org to engage in helping dissiminate the app and suport the pilot (2 weeks)
This will be a joint effort with Neurosurgery and Radiology, key personnel listed below, and we will attempt to engage CTSI mHealth consuting services for the project as well.
Michel Kliot MD, Dept. of Neurosurgery
Nick Butowski MD/PhD, Dept of Neurousrgery
Vivek Swarnakar PhD, Dept. of Radiology - QUIPC
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