Introduction
Purpose of the Survey
About the Database
Who is the Database for?
What about Privacy?
Privacy Chart
Instructions
Step 1 - Register
Step 2 - Do Survey
Step 3 - Expanded Survey
Step 4 - View Results
Purpose - The purpose of this Survey is to gather a wide range of data from people that are afflicted with the USP (Unidentified Skin Parasite) a.k.a. Morgellons Disease and to determine how, where and why we got it and what treatments are most effective. Some questions were suggested. I want to give everyone the opportunity to check out their own theories.
The Database - Rather than making new versions of the Survey when more detail or choices are needed, questions will be added or modified in the Database. You can update your data usually within 24 hours after doing the Survey. There already are several major improvements that increase the accuracy of the data gathered. I will send email notices when there are additions.
Who is the Database for? - The data collected here is for the exclusive use of people with symptoms of "Morgellons" disease as described by the Case Definition at Morgellons Research Foundation or as described by the National Unidentified Skin Parasite Association. All the information gathered here is kept private. It can only be viewed by people who contributed their data to the database. A username and password will be required to view the results. Access for research is permitted by request. There are specific requirements for Research Access. For more information click Research Access
What about Privacy? - Due to the prejudice experienced by almost everyone who talks about their symptoms with friends, family or doctors, many people choose not to discuss Morgellons with anyone. After one doctor labels someone as "DOP", it is very hard to remove the label. It is shocking that even close family members choose to believe you are delusional rather than consider that maybe this is something new. So privacy has a high priority. There are other people that are not concerned so much and would rather be visible to others that might need help or could be helpful. In an attempt to accomodate the wide range of concerns about privacy, there is a "privacy/visibility control" that has 7 levels. They range from "Not Shared" to "Unlimited". Here is an example of how it works: There is a dataview page that uses a map of the USA to plot the locations of everyone taking the survey. Each datapoint can contain information about City, State, Age, Sex, duration of symptoms, severity of symptoms, and even contact info. If you were concerned that friends or co-workers might recognize you from the description, you could select a level that would only show your location and omit the details. Or if you want to find other people near you or allow others to contact you, you can select the level that allows email addresses to be shown. The map is in a private area of the site so only other people who did the survey can see it. The details of the levels can be seen on the Registration Page.
First thing to do is register. You will create a username & password so you can do the expanded sections of the Survey and update your data. The username can be up tp 16 letters and numbers with no spaces, punctuation or symbols.
After you register, you should automatically go to the Survey. If you do not, click here. There are some instructions you should read before starting. You may need to enter your username into the Survey Form, same as you did to register. Alternate method is to login and go thru each section of the database, adding one new record at a time. This is the best way, just be sure to add one record only for each section (6 sections total).
You will be able to access the expanded survey within 24 hours of doing the Survey. For security reasons, survey data does not go directly into the database.The 24 hour delay is needed to verify your survey data and prevent accidental or deliberate damage to the Database. You can also change or update almost every part of the Survey. You will get an email reminder in a few days if you have not returned to complete the Survey in the Database.
You can now access the Results Pages. After you login to the database, look for a link near the bottom of the left-hand side menu called "Survey Results Pages". The next page will have a different menu at the top. The dropdown menu has all the results pages. A new USP Morg Map is coming soon. If you have any questions or problems, you can send email or go to the Fiber Disease Forum and post questions there.