The Mold Avoidance Survey is a research project designed to gather information about the experiences of individuals who have made efforts to improve or protect their health through any sort of avoidance of mold toxins.
The main goal of the survey is to systematically collect information about the experiences that people have had in pursuing mold avoidance, including looking carefully at any specific health changes experienced subsequent to their starting mold avoidance.
A section of the survey also looks at other treatments that people may have tried, to attempt to gauge the effectiveness of those treatments in the context of their also doing mold avoidance.
How Do I Take The Survey?
The survey is available online through Survey Gizmo at the following address:
Am I Qualified To Participate?
Anyone who has engaged in any type of mold avoidance activities in order to try to improve or protect their health may participate.
“Mold avoidance” could mean remediating or moving out of a moldy house, for instance. Or it could mean being very careful to avoid even tiny amounts of mold toxins.
Responses are not limited to people with any particular diagnosis or any particular symptoms.
Individuals may participate in this survey regardless of where they live.
We welcome all responses from anyone who has done any sort of mold avoidance for any sort of health reason.
When Is The Deadline For Responses?
Our current plan is to collect all responses by July 31, 2015. Please check back to see if this date has been extended. UPDATE: The deadline has been extended until September 10, 2015.
Who are the Sponsors?
In order to make sure that the study is done in accordance with standard ethical research guidelines to protect human subjects, as well as to fulfill a requirement for publication of the results in many academic journals, the Mold Avoidance Survey project has requested and received an Institutional Review Board (IRB) approval as an Exempt research project through Northwestern University.
The principal investigator (PI) on the project is Paul Wang, Ph.D., an associate professor in the Medill School of Journalism at Northwestern University.
The co-researcher is Lisa Petrison, Ph.D., the executive director of Paradigm Change.
A letter from the lead researcher about the survey is available.
Following is a list of non-commercial community organizations run by patients or former patients that are co-sponsoring this research study.
* Better Health Guy
* Get Well From M.E.
* Health Rising
* Mold, Biotoxin and Environmental Illness Cure Project
* Mold: The Severe Reactor
* Paradigm Change
How Long Does The Survey Take?
The survey is divided into two parts.
Part 1 is focused on questions related to mold avoidance (plus a few demographic questions). Patient reports suggest that this will take between 14-20 minutes to complete.
Part 2 (which is optional) is focused on questions related to the helpfulness of other treatments for those already avoiding mold. Patient reports suggest that this will take between 6-10 minutes to complete.
Can More Than One Person In My Family Take The Survey?
Definitely. However, we are asking everyone who has done any sort of mold avoidance for health reasons to take the survey separately, so that everyone’s experiences can be considered individually.
If children have been affected and are too young to fill out the survey, then parents or guardians are invited to fill the survey out on their behalf.
What Are The Benefits Of Participation?
The main goal of the project is to gather in a systematic way the experiences of those who have participated in mold avoidance activities and then to share those results with researchers, doctors, patients and others who may be interested in learning about them.
This may encourage more research into the relevance of mold toxins to various diseases and also help to lead to the development of more appropriate treatments.
What If I Don’t Want To Answer A Particular Question?
All of the questions on the survey are optional.
If you don’t want to answer a question – or if you’re not able to answer it – then please feel free to just skip it and move on to the next question.
However, the survey results will be much more helpful if all respondents provide as much data as possible, so please do answer all the questions insofar as you are able and feel comfortable doing so.
What Do You Mean By “Mold”?
Buildings containing toxic mold also may contain other toxin-producing microorganisms (such as certain species of bacteria). The variety of inflammatory toxins made by all of these microorganisms may work together to create particularly problematic effects.
Outdoor areas also may include toxins made by a variety of different microorganisms, including those made by aquatic biotoxin producers such as certain species of cyanobacteria.
Many mold avoiders report that it often can be difficult or impossible for them to know for sure what kinds of microorganisms were responsible for creating toxins that are causing them to feel sick.
Therefore, insofar as individuals suspect or know that toxins made by any sort of microorganisms are an issue for them, all of those biotoxins may be considered as “mold toxins” or just “mold” for the purposes of answering the questions in this survey.
Will The Results Be Made Public?
Yes, the results of the survey will be made available to the public.
Our hope is that this will be through a peer-reviewed published paper. Otherwise, the results will be summarized and shared publicly in a white paper.
Please check back on the Paradigm Change website for more details.
Can I Look At the Survey in Advance of Taking It?
Yes, a list of the Mold Avoidance Survey questions and response alternatives is available at this link.
What About Privacy & Confidentiality Issues?
This is an anonymous survey.
Results will be reported in such a way that the identities of individual participants will not be able to be guessed.
Questions or concerns about confidentiality or privacy issues related to this project are welcome.
Are There Any Risks In Participating?
Thinking back over one’s own health history can have either positive or negative effects on one’s own sense of spiritual and emotional well-being. We nonetheless hope that the process of taking the survey will be a positive one for all concerned, and have structured the questions with that goal in mind.
Other than that, we cannot think of any risks.
What Else Should I Know?
Each person should take the survey only one time (plus additional times if also filling it out on behalf of a child).
The survey is written only in English, and so unfortunately that could be a barrier to participation for some individuals.
Unfortunately, we do not have funding to compensate respondents for the time they spend filling out the survey.
What If I Have Other Questions?
Please send all questions about the survey to:
Thanks very much to all who have helped to develop this survey – and to all who help out by participating in it!
Lisa Petrison, Ph.D.
Paul Wang, Ph.D.