My Mother was diagnosed with dementia 7 years ago. Her mother had dementia as did all her mother's 10 siblings. My Grandfather on my paternal side had dementia. I was 31 years old when my Mother was diagnosed and started looking for a study that wanted to look at younger people who didn't show signs of dementia, but had a history of dementia in their family, but I haven't found one yet. I have dementia on my maternal ...more »
Developing Data, Tracking Progress
How can we measure progress in Alzheimer’s research recruitment?
As the Alzheimer's research community explores and implements enhanced strategies for recruitment, how can we develop consolidated and localized data on recruitment for Alzheimer's studies, track progress in recruitment and retention of study participants, and tailor strategies based on that data?
Ideas in this area might address:
- Meaningful measures of community engagement
- Approaches to measuring return on investment (ROI)
- Indicators of effectiveness for recruitment strategies
- Recruitment data sharing and harmonization
I have been with TrialMatch for Alzheimer's Association for years and the biggest thing I keep getting a road block. Clinical studies are showing that hereditary Alzheimer's may start as early as 20 years prior diagnosis. With my family history, we are looking at the ripe age of 42 and I am willing to be tested but there is nothing out there. I am going to be 41 and now is the time to start collecting data and seeing ...more »
There are no trials in my area, so Trial-Match directed me to online studies. I have participated in all that I could - 3 or 4. They all ask for some medical history and lifestyle (diet, sleep, exercise, smoking) information, and then I complete memory tests. I have noticed that between studies they don't all ask for the same information regarding medical history or lifestyle. Since these are so important to disease ...more »
Create a national, regional, or local recruitment infrastructure that enables tracking of research-ready volunteers, via registries and other consented sharing mechanisms. Bring together trialists and research sponsors (e.g., foundations, governments and industry), facilitated by additional experts like industrial engineers and implementation scientists, to discuss recruitment practices with regard to standardized and ...more »
As each person becomes eligible for Medicare, test them for cognitive impairment to establish an individual's benchmark
There is much valid research that has already been done that has not been evaluated and disseminated well to the providers of care, neither physicians, educational institutions nor institutional providers of care. Address translation of scholarly research and distribution of applicable material for actual application to professionals, educators, clinicians and family caregivers. My small educational research project ...more »
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 »
I was a subject in a commercial drug trial performed by a local university to determine the effectiveness of a new drug proposed for potential Alzheimer's patients. They collected a large amount of data over a period of 18 months. This data was archived and could be made available for future studies. I also could be available for further study in conjunction with the previous data.
Develop an app and in addition to the traditional TrialMatch offering, create a platform for lifestyle tracking for all ages. This can be a passive feature (not related to a current research trial). The benefits of this are vast: - It would provide a public health-related service (tracker for food/exercise/mood/lifestyle, etc.) - Would create a much more engaged participation base - Would amass data (with user consent, ...more »
Set site or region specific recruitment targets and enforced accountability metrics to ensure inclusion goals are met.
Identify measures of success for a registry and compare the effectiveness of registry models (e.g., national vs. regional or local; Alzheimer’s and dementia vs. “brain health;” on-line vs. in-person; primary care vs. community vs. memory care based, etc.).
Available Information Technology data is going exponential across the world. Reach up to big data sites and encourage collaboration, Kaiser Permanente, ConsumerLab.com, Major NIH and other health data collectors as examples. Also find alliances outside the U.S. that are collecting & sharing Mega Data on health. Encourage discussions about collaboration and sharing data on multiple important health issues, such as Alzheimer's. ...more »
While totally acknowledging the value of information obtained with high dose radiation (PET-CT scans) to brains of asymtomatic people risks associated with this radiation exposure need to be fully addressed.
People receiving testing followed for possible consequences of the testing. Compensation down the road for consequences of exposure need to be addressed up front.
Develop a strategy to evaluate the effectiveness of community outreach, e.g., tracking engagement for social media, websites, hotlines.
Facilitate reporting by investigators and sponsors of screening, randomization, and retention rates of various trial designs.