Publicly funded academic efforts to research and develop software technologies frequently suffer from the following hindrances to wide market adoption: 1. They result in open source tools which require expertise to install, configure, and use (e.g., see the myriad of open source, complex tools for bioinformatics and genomics, or most python-based solutions). 2. Support and maintenance are often left to the end user, ...more »
There is a significant need to support patients with Alzheimer’s disease and related dementias and their families with health care planning towards the end of life. Notably, there is a need to provide consistent support and education during the planning process. Health care providers must do more to provide this needed education and support. One such idea is to improve the coordination of care via a high-level education ...more »
Our group of meteorologists and physicians have been researching the relationship of real-time weather and human health. We have found very strong relationships between several ongoing health concerns. We believe that using wearables, looking at patient databases of actions, medicine use, and emotion, we can co-relate with weather data. With that, we can actually predict some actions of risk. Weather impacts every aspect ...more »
Currently, Clinicaltrials.gov is the database featuring all clinical trials. Unfortunately, it is written in clinical-speak, making it hard to locate and detemine what clinical trials are available for participation. I suggest a simple app be created that combs the Clinicaltrials.gov database for recruiting trials based on the stage of Alzheimer's disease. This would expedite the search and allow patients and caregivers ...more »
With most providers utilizing several different electronic health records and results from visits not share in the appropriate time frame. Or one shared patient portal related to his/her Alzheimer appointment. Recently has to take my family member to an urgent care facility as her PCP doesn't have weekend hours and we were at this appointment for five hours. My family member was severely dehydrated and required an ...more »
The testing that is available presently is for identify mild, moderate, or advanced ALZ. There have recently been limited research to see if the sooner a person is identified and treatment begins the slower the disease progresses.
Need research to develop tests to identify earlier symptoms of the disease.
A dedicated databank should be created for those interested in Alzheimers trials. If the program could incorporate data mining, where information entered by the neurologist could instantly exclude people from certain trials but include them for others. If the program could, instantly, populate a list of possible trials in which patients met inclusion criteria, then patients and their families could research which of ...more »
Many, if not most, folks have access to the internet and can provide their input electronically, provided the study is designed to allow use of multiple platforms and methods. As part of a clinical trial I've been asked to join some cognitive studies on-line. However, the software allows only for touchscreen and apparently doesn't support Mozilla Firefox. A study whose design incorporates a range of input capabilities ...more »
Create and maintain a database of Alzheimer's patients and their family members. This will enable researchers to not only contact family with important research results but also to have the ability to follow this disease on a massive scale. Then maybe scientists and researchers will have a better opportunity to find trial participants with documented genetic links to this disease.
My colleagues and I are building a community that supports family caregiving, providing education, support and access to providers. Our members will wear health monitoring bands, so their vitals and those of their charges can be monitored, enabling medical professionals to offer guidance in real time. We will also be collecting the data, scrubbed for HIPAA compliance, to researchers to use for development of cures and ...more »
Develop an app where you currate all of the information related to clinical trials. You can then filter the information by specific conditions, location, etc. Users would sign up for the app by providing information on the patient's situation and the app should be able to match them to available studies. App could be promoted on social media by targeting users of FB based on their age, gender, interests, pages they ...more »
Offer evidence based education tools for cognitive health to the public -- most people are naturally curious about their brains, and would appreciate a standardized education/feedback approach to understanding the range of modifiable & non-modifiable factors that can influence dementia risk. Examples include: Health Factors: hypertension, cardiovascular disease, diabetes type 2, concussion/head injury history, etc. ...more »