ADDF Town Hall - 2023

Pat & Dennis Bender Early Dementia Diagnosis & Prognosis Fund

 

J. Dennis Bender

Office, Home & Cell Phone: 859-391-5226

5726 La Jolla Blvd. – Suite 311

La Jolla, CA 92037-7345

&

Office - 100 Riverside Pl. - Suite 303

Covington, KY 41011-5711

 

We support the development of improved diagnostic methods for the early detection and diagnosis of MCI, Alzheimer’s, vascular and other dementias, their likely prognosis, and best treatment options. We focus on the development of Bayesian-based medical-decision-support systems, comparative-effectiveness research, and the better utilization of these for the above. (After incorporating in KY as a 501(c)(3) in 2002, we dissolved that entity for a simplified form of two entirely self-financed, private philanthropies utilizing a Vanguard Charitable Trust for making annual-research-grants for early-dementia-detection and its correct differential-diagnosis and likely-prognosis. They will continue on, after I am gone, either mentally or physically. Prof. Randall Bateman is the first of our fund’s research advisors.

See: https://www.alz.org/alzheimers-dementia/research_progress/earlier-diagnosis )

 

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www.JDBender.com – EMS/eVTOL Experimental Aviation Fund (Vanguard Charitable Trust)

www.JDBender.org – Dementia Diagnosis Fund (Vanguard Charitable Trust)

 

September 21, 2023

 

 

Meeting Summary

• This meeting highlights new neurologic-data-sharing-efforts
• Cooperation and data-sharing are key
• Healthcare has been slow to finally begin sharing their data
• Diagnostics improving and finally momentum now for data-sharing

 

 

 

 

 

 

 

Howard Fillit - Better way to present current AD drug-trial successes is to say “30% stabilized by these new drugs” vs. saving “delays by 8-months.”

 

FINGERs I & II global-data-sharing effort (Stockholm), Davos AD Collaboration, Diagnostics Europe. AD Connect, ADPNet, Dementias Platform UK (DPUK)

 

40% modifiable risk-factors

 

5-fingers-items

 

So many negative-trials in 2017! Motivation to start-sharing-data.

 

Rare to share clinical-trial-data previously – [You don’t say! I’d say impossible, from my own personal-experience at UCSD even offering substantial-research-grants if they would just agree to do so with already-existing-data! Which they would not, if a single-one of the many joint-researchers objected, which always happened with at least one of them nixing the entire effort! Looking forward to a potential new major project with two Chinese groups of both vascular and AD dementia researchers, as described in my doc: Memantine, Donepezil, or Combo 2.]

 

Dominantly-inherited-disease-families: range of diversity in presentations in this group and different-genetics across different-cohorts

 

Key is having diversity in the datasets.

 

Ethnographic-differences, caregiving-differences, biomarkers, etc. all needed in understanding.

 

Important to share-data to find common-factors

 

Differences in the APOE-cohort in Japan

 

Digital tools, blood-biomarkers, choice-of-tools, and adjustment to different-populations.

IRB-approval very-slow-process

Data-storage-issues

Lots of data being collected

Some poor data-administration is some institutions

TPPR in Europe

Lots of variation between organizations

Not a quick process

Different expertise

Roche contribution to effort

Biomarker standards

Quality-of-data, data-management, sharing-mindset needed

Sharing of learnings easily needed

Constantly changing landscape

Differing populations, incomes, across countries – ADDI data sharing coming live soon

Africa-FINGERs study

Don’t want more data-silos, but rather data-sharing

Question of which measures

How to maximize learnings

Long-term population-tracking needed and data-sharing

Country and cultural differences

Davos AD Collaboration

Need data from different countries with different environmental conditions

Target younger-populations – smoking, alcohol, etc.

Blood-based-biomarkers the way to go

(Diabetes research doing this now)

COVID-example of cooperation success

Neurological-differences regionally

Data-harmonization

ADDI-platform-data upload

Access-control of data by PI

Data-ownership issues

Share what you want to start and more later

New ideas from sharing data

Kivipelto - needed help from this system

Researchers not focused on data so need additional data-experts

Contracts now easier for data-sharing

Online data requests

Took a long time to get data-sharing between universities

“Takes too much time” was previous objection

Need it now

Urgency of data-sharing

Kivipelto - need biomarker-definition now!

Children of AD-parents

Biology of AD internationally unknown

APOE-effect differs by culture

Not just plaques & tangles

Vascular-risk-factors vary by country

ADDI-variable-definition made clear

Data-harmonization at core, need at least biomarker-collection

Listen to each other and share-data

Building trust and collaboration hard across organizations

Years needed to start trials, can’t force it

Levels 1-4 of data-harmonization

Local capacity to reduce data-silos

AI and brain-cell-cultures, baby-birth-defects, human-cell-studies

 

My Keywords & Key-Phrases: [Indicated by hyphens(-), bold & italics were used in my old customized-inverted-file-search-routine, but now totally-obsoleted by ChatGPT, Google search, etc. Over 9,000+ of my old research-documents were all annotated this way for use with that old customized-search-routine that I created for searching my personal-document files; to avoid just using very-common, single-keywords, such as just “watching,” but rather compound-keywords, something like “watching-TV” or “sedentary-watching-TV,” which is very-different than just individually searching for “watching” & “TV” separately, which most search-routines did. I implemented my own custom alternative to using standard Boolean-nomenclature and keyword-search-routines for doing all that, but now we have a much-better alternative based on AI technology.]

[Keywords and compound-keywords (tags) are highlighted-and-hyphenated in italic-and-bold; place-names, organizations and titles are in bold; media-names put in italic.  Instead of underlining, I’ve been experimenting with hyphenating entire phrases – long-tail-keywords. This odd style was being tried to enhance generative-AI processing and ease-of-spotting items-of-interest in my specific website-achieved documents.  Now generative-AI and similar have eliminate this time-consuming distraction.]

{ADDF Town Hall - 2023}