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.).
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
Facilitate reporting by investigators and sponsors of screening, randomization, and retention rates of various trial designs.
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 »
Set site or region specific recruitment targets and enforced accountability metrics to ensure inclusion goals are met.
Develop a strategy to evaluate the effectiveness of community outreach, e.g., tracking engagement for social media, websites, hotlines.
Develop measures of trust within communities.
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 »
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 »
To be trite, do not reinvent the wheel. I believe studies of a similar nature have been conducted. Inventory them, determine which were most successful at achieving their desired outcome. Cherry pick the best characteristics from the prior studies. Using the prior studies as models, employ the same techniques to qualify and recruit candidates.
Just want to know if what I'm talking, doing, etc. Is really helping one into the study. I wouldn't mind staying in it if there was a possibility that it would help someone else even if it didn't help me.
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 »
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.