Health Through Knowledge

The Serano Group



Request an invitation to participate in the Census

(If link does not work, send an email message to )

 

About The Serano Census

Many questions about Lyme borreliosis need answers.

The first step in solving a problem is to determine how big the problem is. For borreliosis, this means counting how many people have the disease. Public health officials and commercial researchers started with an extremely limited definition of Lyme disease and have steadily restricted their case definition over the years. Peer pressure and lack of physician understanding further restrict accurate reporting.

The CDC recorded seven cases of Lyme disease from Oregon in 2006. Yet, one out-of-state physician tells us of treating of over forty Lyme disease patients from Hood River County, Oregon (population 21,500). Let’s assume the forty patients came over the course of four years, making ten new cases a year from Hood River. Is the incidence of Lyme disease in Oregon the CDC’s 1 in 529,000, or the treating doctor’s 1 in 2,150? Instead of seven new cases of Lyme disease a year in Oregon, we could have 1,725 or more new cases a year in Oregon.

Is Hood River any better or worse than anywhere else in Oregon, or the United States?

Clearly, we need numbers.

Until the Lyme disease tests are greatly improved, Lyme disease must be defined by symptoms and response to treatment. Rather than define borreliosis so strictly that only a tiny portion of the infected are counted and the rest ignored, the Serano Census seeks to describe a population with impaired health, note their response to antimicrobials (generally, antibiotics), and then analyze test results and other characteristics. Rational health care decisions can then be made, both for individuals and the population as a whole.

A primary objective for this study to is offer ease of reporting with options for individuals to provide more detail if they are able. Complexity should not hinder acquisition of primary statistics. Neither should prior misconceptions or misdiagnoses.

It is very easy to misdiagnose Lyme borreliosis as:

     
  • Multiple sclerosis (MS)
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  • Lupus (Systemic lupus erythematosus, SLE)
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  • Fibromyalgia
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  • Chronic fatigue syndrome (CFS, CFIDS)
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  • Parkinson’s disease
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  • Amyotrophic Lateral Sclerosis (ALS)

The Census is ready for participants. If you would like to take part, particularly if you are from Oregon or Washington, please request an invitation to participate in the Census. (If link does not work, send an email message to ) We welcome all North American and EU visitors to participate in the Census.  All inquiries and census responses are kept strictly confidential and we will never pass on your contact information to anyone. If you decide to participate, your census responses are kept in a database completely separate   from the invitation system. While it helps our researchers greatly if you choose to provide contact information in your census response, we do offer the option for you to supply census responses anonymously.


Serano Census Details

Goal

To quantify and characterize human cases where persisting health impairment benefited from antimicrobial therapy.

Objectives

     
  • Accuracy in recording symptoms, treatments, and subject demographics
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  • Rigorous protection of subject privacy
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  • Publication and analysis of collected data

Implementation Plan

     
  • Develop database schema to ensure data integrity, security, and compatibly to data standards with adequate scope to address clinical questions
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  • Data collection for initial pilot project filtered to restricted geographical area
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  • Analysis and publication   of initial pilot data
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  • Expansion of data collection to United States
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  • Analysis and publication of United States data

Instrument or method

Online or written surveys; personal interviews.

 


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