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 (@renvan)

Start collecting data of family groups with dementia in the family

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 »

Voting

44 votes

Developing Data, Tracking Progress

Submitted by (@adsmola)

All in the Family, the early years

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 »

Voting

24 votes

Developing Data, Tracking Progress

Submitted by

Encourage more collaboration efforts between various research groups.

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 »

Voting

20 votes

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 (@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 (@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 (@pwlockwood)

Followup

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.

Voting

11 votes

Developing Data, Tracking Progress

Submitted by (@rasmith)

An App!

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 »

Voting

11 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