CDC Investigation

Given the complexity and number of diverse symptoms reported by people who experience this unexplained skin condition, CDC is undertaking a measured and thorough scientific investigation which offers the best chance for finding useful answers. CDC is conducting this study along with Kaiser Permanente’s Northern California Division of Research. The study was designed and is being led by CDC.

The primary goals of the study are to learn more about who may be affected with this condition, the symptoms they are having, and what factors may contribute to the condition. The study involves: Determining the clinical and epidemiologic features of this condition; examining skin biopsies from affected patients; characterizing foreign material such as fibers or threads obtained from persons with the condition; and estimating rates of illness among the study population.

What is the current status of the study?

Study recruitment, examination of participants, and collection of samples has been completed. We are currently analyzing the data collected.

How will CDC communicate information about this condition and the findings from the study?

On September 24, 2009, CDC convened an external review panel made up of experts from the fields of dermatology, infectious diseases, public health, and mental health which examined the study activities to date and provided advice on future activities. The panel will provide recommendations and guidance to CDC about analyses they think should be conducted on the data. CDC’s CCID Board of Scientific Counselors met in November 2009 and was provided an update on the progress of the panel’s review (Preliminary Report on Progress of External Peer Review of CDC's Unexplained Dermopathy Project to the CCID Board of Scientific Counselors[PDF, 11 KB]). When CDC receives a report from the external review panel, it will be made available on this website.

When data analysis is complete and results of the study are available, the findings will most likely be published in a peer-reviewed scientific journal and disseminated through other channels, to CDC’s public health partners, such as State and local health departments and medical societies, and through this website.

In December 2008, CDC mailed letters to state medical associations, in case they and their members received inquiries about this condition, in order to provide an update about CDC’s activities. Letter from CDC to medical association[PDF, 45 KB] We will provide an update to these organizations as well, when the study results are available.

Why did CDC select Kaiser Permanente Northern California as the partner for the study?

There are several factors that led CDC to select Kaiser Permanente Northern California as the partner in this study. First, this condition is thought to be rare; therefore, CDC sought a location and an organization that would likely have an adequate number of affected persons to be able to conduct a careful investigation. Kaiser Permanente Northern California is located in a geographic area where self-reported cases of this condition are concentrated. Second, Kaiser Permanente has a membership that comprises a large proportion of the population in the Northern California area, thereby allowing estimation of rates of the condition in the population. Third, Kaiser Permanente has electronic health records that allowed a systematic method of identifying persons who may have this condition.

Who was eligible to participate in the study?

Participant selection followed a set protocol, and not all persons who identified themselves as having signs or symptoms of this condition were eligible to participate in the study. Eligible participants were required to live in the Northern California area, were at least 13 years old, had been a health plan member of Kaiser Permanente Northern California from July 2006 through December 2007, and had compatible signs and symptoms of the condition as described in the study protocol.

May I send samples to the CDC laboratories for confirmation of this condition?

CDC is not able to accept specimens or samples for testing, and we are not aware of any public health labs that are performing tests specifically related to this condition. Persons who believe they may suffer from this condition should contact a licensed healthcare provider for evaluation and medical care.

Can you advise on the steps that I should take to report this condition?

"Morgellons" is not a condition that is reportable. Persons who believe they may suffer from this condition should contact a licensed healthcare provider for evaluation and medical care. CDC is not a clinical facility and does not provide clinical care or consultation to patients.

Does CDC plan to expand the study to other locations or include other persons who may be affected with this condition?

The current study was limited to persons living in Northern California and to persons who met the study's eligibility criteria. Decisions regarding future studies will be determined based on the findings of this study and on recommendations from the peer review panel.

If I have more questions about the study, what should I do?

Inquiries regarding this study can be sent to:
Email: morgellonssyndrome@cdc.gov or
Phone: 404-718-1199 (Pre-recorded message with voicemail)

At this time, we are not able to provide individual responses to each inquiry, but our public inquiry e-mail and phone line are checked regularly. Answers to frequently asked questions will be posted to this web site, and this web site will be updated with new information as it becomes available.