Developing Data, Tracking Progress

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

Developing Data, Tracking Progress

Submitted by (@natlefforts)

Create a national, regional, or local recruitment infrastructure to track volunteers

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 »

Voting

15 votes

Developing Data, Tracking Progress

Submitted by (@pzxnelson)

Reach up to big data sites and encourage collaboration, Kaiser Permanente, ConsumerLab.com

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 »

Voting

9 votes

Developing Data, Tracking Progress

Submitted by (@jflossie)

While building new research strategies, look back at research already done to build upon

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 »

Voting

13 votes

Developing Data, Tracking Progress

Submitted by (@hinckleybob)

Benchmark related prior studies and use the best as a starting point

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.

Voting

6 votes

Developing Data, Tracking Progress

Submitted by (@grandfamilyplanning)

Creating a Global Community

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 »

Voting

12 votes

Developing Data, Tracking Progress

Submitted by (@kristins09)

Ms

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.

Voting

8 votes