Canada, New Brunswick, cases of an undiagnosed neurological illness cases, update
I thought I should give an update on Canada, New Brunswick, cases of an undiagnosed neurological illness cases, that so far, has ruled out any prion disease such as Creutzfeldt-Jakob disease (CJD), per Michael Coulthart, who is the head of the Canadian Creutzfeldt-Jakob Disease Surveillance System. …terry
Canada, New Brunswick, cases of an undiagnosed neurological illness cases, update
HealthData analysis underway in investigation of undiagnosed neurological illness
27 March 2025
FREDERICTON (GNB) – The Office of the Chief Medical Officer of Health has begun the next phase of its investigation into cases of an undiagnosed neurological illness in the province.
The office has received enough complete and verified patient data to work with the Public Health Agency of Canada to conduct an analysis.
“We know New Brunswickers are concerned about this file, and we are, too,” said Dr. Yves Léger, the chief medical officer of health. “We want to get answers for these patients. The results of this analysis and scientific investigation will help us to determine what next steps are needed.”
The investigation started in 2021, when Public Health studied a group of 48 patients with a range of neurological symptoms. The investigation found no evidence of a common illness, and a report was issued on Feb. 24, 2022.
In early 2023, the referring neurologist raised new concerns to Public Health, including more patients reporting unusual symptoms. Since then, the Office of the Chief Medical Officer of Health and the Vitalité Health Network have been working together, with support from the Public Health Agency of Canada, to assist the neurologist in collecting and verifying the patient information needed to allow for further investigation.
The main purpose of this investigation is to further understand concerns brought forward by the physician regarding certain environmental factors.
“There’s been a lot of interest and concern on this topic,” said Léger. “If you want to know more about the objectives, next steps and timelines related to this work, I encourage you to visit our new website dedicated to this topic. We’ll be updating this site regularly as we complete this work.”
Next steps in the investigation include completing the data analysis, interpreting the analysis, a scientific review of the findings, which will be completed by the Public Health Agency of Canada, and finalizing and sharing a report on the work completed and recommended next steps.
The investigation is expected to be completed by summer.
27-03-25
https://www2.gnb.ca/content/gnb/en/news/news_release.2025.03.0115.html
Investigation of cases of undiagnosed neurological illness
The Office of the Chief Medical Officer of Health (OCMOH) is continuing to investigate cases of undiagnosed neurological illness.
Overview
Since becoming aware of cases of a potentially undiagnosed neurological illness, the Government of New Brunswick has led two separate investigations into this matter. Supports have also been provided to affected patients as well as physicians who are caring for these individuals.
The investigation started in 2021, when the Chief Medical Officer of Health studied a group of 48 patients with a range of neurological symptoms. The investigation found no evidence of a common illness among these patients and a report was issued on Feb. 24, 2022. The report included recommendations and follow up actions to support patient care.
The full timeline of the 2021-2022 investigation can be found here.
In early 2023, the referring neurologist raised new concerns, including reporting more patients with unusual symptoms. The physician has suggested different ideas about causes for these symptoms.
Since then, the Office of the Chief Medical Officer of Health, Vitalité Health Network, and the Public Health Agency of Canada have been working together to support the neurologist in the collection and verification of the required patient information. Once these reports are complete and received, the Chief Medical Officer of Health will analyze the information, interpret the results and make recommendations on any next steps required.
Objectives of Investigation
The purpose of this investigation is to assess concerns of elevated levels of certain environmental substances, and to review relevant files to determine whether a diagnosis has been made for some patients.
This investigation will not involve establishing criteria to determine the presence of a cluster and its characteristics or detailed clinical review of patient records.
The findings of the current investigation will help determine next steps.
Current status
Current status (updated: March 13, 2025): Analysis underway
As of February 28, 2025, 222 enhanced surveillance forms have been signed off by the referring neurologist. We now have enough fully reported and verified patient data to begin the analysis, with assistance from the Public Health Agency of Canada.
Next steps
What we’ll do How we’ll do it When we’ll do it
Data analysis The data will be analyzed with support from the Public Health Agency of Canada. Underway
Interpretation of analysis Office of the Chief Medical Officer of Health to review field epidemiology report of the data analysis, interpret, and make recommendations for next steps. May-June 2025
Scientific review Results of the analysis will be sent to the Public Health Agency of Canada for review. May 2025
Finalize report Review feedback/comments from the Public Health Agency of Canada. Complete edits and finalize design. Late Spring 2025
Release report Share findings and any next steps with the public, affected patients and First Nations. Late summer 2025
* Timelines are estimates and subject to change. Delays for one activity could impact other steps. Timelines will be updated as required.
Timeline
For the full timeline of the 2021-2022 investigation, click here.
2025
March 2025: Data analysis underway with assistance from Public Health Agency of Canada. All 222 enhanced surveillance forms signed off by referring neurologist included in the analysis. January, 2025: Steps put in place to ensure the neurologist has sufficient time to sign off on the remaining patient files.
2024
December 16, 2024: Office of the Chief Medical Officer of Health mobilized a field epidemiologist from PHAC to assist with creating a detailed data analysis plan for the next phase of this investigation. The field epidemiologist also assisted with creating a draft report template to be populated following completion of the analysis.
July 17, 2024: In-person meeting held with referring neurologist, Office of the Chief Medical Officer of Health and Vitalité Health Network where plan is agreed upon to support the sign-off of patient files received in May, including a reduction in clinic duties and additional support staff.
May 2, 2024: A package with all the of the completed enhanced surveillance forms was provided to the neurologist for review and sign off.
March 18 - April 5, 2024: A Public Health Agency of Canada field epidemiologist and a Vitalité Public Health nurse were mobilized to the referring neurologists office to complete the extraction of data to complete the enhanced surveillance documents.
2023
November 27 - December 20, 2023: Public Health Agency of Canada epidemiologist supporting Public Health and Vitalite Public Health Nurse mobilized to the referring neurologist’s office to assist with data collection efforts. Public Health Agency of Canada Epidemiology helped Public Health develop a database and guidance for data extraction and database entry.
November 9, 2023: Public Health requested assistance from the Public Health Agency of Canada Field Epidemiology program to assist with the data collection step.
July 2023 - September 2023: Public Health requested assistance from Public Health Agency of Canada to help with the completion of a scoping exercise. The purpose of this exercise was to determine the volume, format and type of information collected and available on the patients, in order to help guide data collection. During this time, Public Health Agency of Canada and Public Health worked together to clarify the assistance needed and determine which resources would be most helpful.
April - May 2023: A two-page enhanced surveillance form is developed by the Office of the Chief Medical Officer of Health Epidemiology and Surveillance team to gather necessary data. The form is sent to the referring neurologist.
January 2023: The Chief Medical Officer of Health was notified by the neurologist of his concerns regarding potential environmental exposures to certain substances. They also indicated the number of cases has grown to 147.
2022
February 2022: GNB releases report and concludes investigation into 48 cases.
February 2022: Oversight committee release its findings on 48 cases.
Frequently Asked Questions
Why is government investigating cases of undiagnosed neurological illness?
What’s the difference between this investigation and the investigation in 2021-22?
Who is helping the Government of New Brunswick with this investigation?
What is the role of the Public Health Agency of Canada in this investigation?
Why is it taking so long for the investigation to be completed?
How many patients are involved?
What about the remaining files? Are you capping the number of cases to be included in this investigation?
How can New Brunswickers stay engaged and informed about this process?
How will government help these patients?
https://www2.gnb.ca/content/gnb/en/departments/health/neuro-cluster/investigation.html
Investigation into a Neurological Syndrome of Unknown Cause: An Epidemiological Summary of Enhanced Surveillance Interviews
Epidemiology and Surveillance Branch Public Health New Brunswick
Date: October 26 th , 2021
https://www2.gnb.ca/content/dam/gnb/Departments/h-s/pdf/en/CDC/investigation-neurological-syndrome-unknown-cause.pdf
See archived link;
New Brunswick Cluster of Neurological Syndrome of Unknown Cause
https://www2.gnb.ca/content/gnb/en/departments/ocmoh/cdc/neuro_cluster.html
Epidemiology and Surveillance Branch Public Health New Brunswick
Date: October 26 th , 2021
https://www2.gnb.ca/content/dam/gnb/Departments/h-s/pdf/en/CDC/investigation-neurological-syndrome-unknown-cause.pdf
See archived link;
New Brunswick Cluster of Neurological Syndrome of Unknown Cause
https://www2.gnb.ca/content/gnb/en/departments/ocmoh/cdc/neuro_cluster.html
See archived link;
Michael Coulthart is the head of the Canadian Creutzfeldt-Jakob Disease Surveillance System. He said he’s ruling out a prion disease such as Creutzfeldt-Jakob disease (CJD), but notes that many neurological disorders have features that overlap.
“What we can say with confidence is if we assume that the cluster has a single cause, that cause is not prion disease,” he said in an interview earlier this week. “It has been ruled out in enough people that we are no longer considering this to be a top candidate.”
Researcher says brain disorder in N.B. may be linked to environmental exposure By Kevin Bissett
https://www.niagarafallsreview.ca/ts/news/canada/2021/03/26/researcher-says-brain-disorder-in-nb-may-be-linked-to-environmental-exposure.html?li_source=LI&li_medium=niagarafallsreview_canada
FRIDAY, SEPTEMBER 23, 2022
Neuropathology of 8 patients of the New Brunswick cluster of Neurological Syndrome of Unknown Cause
No prion disease was found in any of the 8 autopsy cases.
https://creutzfeldt-jakob-disease.blogspot.com/2022/09/neuropathology-of-8-patients-of-new.html
WEDNESDAY, OCTOBER 27, 2021
New Brunswick October 27, 2021 - Health minister availability Report on cluster of unknown neurological disorders update
https://cjdusa.blogspot.com/2021/10/new-brunswick-october-27-2021-health.html
THURSDAY, MARCH 18, 2021
New Brunswick monitoring more than 40 cases of unknown neurological disease symptoms are similar to Creutzfeldt-Jakob disease?
https://creutzfeldt-jakob-disease.blogspot.com/2021/03/new-brunswick-monitoring-more-than-40.html
terry