The Alzheimer’s Registry

In our data-driven age, the emerging Alzheimer’s disease registry — a system that could collect and share biomarker, genetic, and clinical data from people at risk or with early-stage Alzheimer’s — sits at the intersection of societal benefits and individual rights.

The Registry

Promoters claim such registries would generate effective therapies, improve public health planning, and reduce costs.

Opponents argue the registries raise serious privacy, ethical, and discrimination issues.

The first known patient disease registry was established in 1873 for leprosy.

The next registries for cancer began in the 1900s.

Depending on the “study population,” there are now private or public registries for diabetes, environmental health, pregnancy, research recruitment, and vaccination, by state.

*Vaccine status registries resulted in public access to immunization records.

There are 51 State-based disease registries.

The National Institutes of Health (NIH) lists over 80 national disease registries.

Now, Alzheimer’s registries are popping up all over the U.S.

According to the Alzheimer’s Association, approximately 1 in 9 people, age 65 and older, has Alzheimer’s, or 7 million Americans (1 in 5 women, 1 in 10 men). By 2050, this number is projected to nearly double to 13 million.

When RFK Jr.’s proposed autism registry raised serious ethical and privacy concerns, it provoked a widespread backlash over potential misuse of sensitive medical data.

So, why register Alzheimer’s disease?

Official Purpose

The official reason for South Carolina’s 40-year old Alzheimer’s Registry is as a data source for:

• Types of dementia by demographic, groups, etc.

• Alzheimer’s disease and related dementias (ADRD) prevention

• Epidemiology of ADRD

• Risk factors for Alzheimer’s disease

• Prevalence of Alzheimer’s disease

• Research

Note, the prevention of Alzheimer’s is on the list.

But, as we know, disease prevalence is predicted to grow. So why is prevention still on the list?

Because in allopathic medicine, prevention means vaccines. In fact, as of April 2026, there are 8 vaccines linked to a lower risk of dementia.

According to the National Vaccine Information Center:

Nowhere is this threat more evident than in the creation of a national, government operated vaccine tracking registry system that will tag all American citizens with a national ID number at birth and track their movements throughout life for the express purpose of enforcing vaccination with all government-endorsed vaccines. It was the desire by government health officials to enforce citizen compliance with mandatory vaccination laws that first created the need for a National ID number and the national electronic medical records database promoted by the Clinton Administration in 1993.

Tracking

In the U.S., Alzheimer’s disease registries digitally track individuals.

Since 1988, the South Carolina Alzheimer’s disease registry has tracked Alzheimer’s patients, as well as caregivers and researchers.

In Wisconsin, registrants are asked to provide information about their education, work background, medical history, current medications, diet and exercise habits, daily activities, social stressors, and family history of dementia.

Anyone can request register data through the WI website, under WRAP. No pun intended.

In Florida, doctors will be required by law to complete ADRD training, in order to detect and diagnose all patients by name with a neurological diagnosis, “to improve care.”

For Floridians, a “clinical care visit” leads to a comprehensive care plan which is updated at least once a year. Of course, medical doctors can bill under code 99483.

Florida Statutes §430.5025 mandates employees of licensed or registered care settings — nursing homes, assisted living facilities, home health agencies, and adult day care centers — receive 1-hour department-provided training within 30 days of starting employment if they provide personal care or have regular contact with residents.

Questions?

1. What does mandatory training for State Registries involve?

2. Why is patient information in a digital database protected by HIPAA guidelines, except under certain conditions (i.e., public health authorities, emergencies, emails, etc)?

3. Who is using the digitized data (i.e., medical students, medical schools, drug companies, politicians, W.H.O)?

4. Is transparency built in to Registry use?

5. How is registry data being used?

   1. to determine how many people are incompetent?

   2. to prevent voting?

   3. for medical drug compliance?

   4. experimentation?

6. Under what circumstances does private medical information become public?

7. If ADRD prevention is still a reason for the 40+-year old South Carolina Alzheimer’s Registry, but ADRD continues to grow, then has the Registry failed?

8. How is Registry failure tracked? What are the consequences?

9. If autism and Alzheimer’s are two ends of a disease-based spectrum, what is causing an era of rapidly evolving dementia diagnostics and treatments?

10. What are the potential dangers of Registry implementation without adequate oversight?

Dangers!

If established without sufficient safeguards, the consequences could be severe, including:

• Exposure or unchecked dissemination of sensitive information to government agencies, corporations, and malicious actors.

• Potential for privacy violations, ethical breaches, and the misuse of sensitive medical information.

• Employment discrimination based on disclosed medical histories.

• Insurance challenges, where families fear being judged or penalized for their loved ones’ conditions.

• A systematic targeting of individuals deemed “other” is symptom of eugenics.

• Protections that are rarely enforced.

The ‘Public Safety’ Ruse

Public registries are supposed to protect private information, as well as “public safety,” through transparency (i.e., sex offenders).

But, how is privacy protected when registry advocates argue that public safety trumps individual privacy concerns?

Therein lies the problem — “public safety.”

There is no such thing as “Public Safety;” only individual safety. Likewise, Public Opinion, Public Health, Public Body, and Public Perception are myths that political elites promote in order to justify a right to rule over groups.

There is only individual opinion, individual safety, individual bodies, individual perception, and individual health. [i.e., I cannot exercise to cause someone else to lose weight].

Abuse of Registries

Even though digital registries come with explicit disclaimers, they can result in:

• harassment or intimidation campaigns of registrants

• discrimination and exploitation of information

• lack of accessibility for diagnosed patients

• fabrication or distortion of information

• lack of enforcement re: misuse of information

• permanence of digital records; a digital tattoo comes with no off switch.

Shift the Narrative

Unchecked misuse and abuse undermines justice.

Health Freedom organizations, such as the National Health Freedom Coalition (NHFC), do not support any mandatory registry.

How to Improve Registries?

• Restrict public access to registries.

• Prioritize transparency.

• Improve enforcement.

• Pause the registry initiative for a thorough ethical review.

• Set up an Ethical Registry with penalties for misuse.

Is reform likely?

Likely not.

Besides, why advocate for more laws if current ones are not enforced?

The good news? This is an opportunity to self-educate, self-advocate, or advocate on behalf of a loved one, before agreeing to enter any Registry.

*Note: the author was past president of the NHFC for a decade.