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Unexplained Dermopathy (aka "Morgellons")
CDC Investigation
The suffering that many people associate with this condition is best addressed by a careful, objective scientific analysis. Considering the complexity of this condition, we believe that a measured and thorough approach offers the best chance for finding useful answers.
To learn more about this condition, CDC is conducting an epidemiologic investigation. CDC has awarded a contract to Kaiser Permanente's Northern California Division of Research to assist CDC in the investigation of this condition. The study is being designed and led by CDC.
The primary goals of the investigation are to help us learn more about who may be affected with this condition, the symptoms they experience, and to generate hypotheses about factors that may contribute to it. The investigation will involve: determining the clinical and epidemiologic features of this condition; assessing the histopathology of 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.
Frequently Asked Questions
For answers to frequently asked questions about CDC's Unexplained Dermopathy Investigation, click on the links below.
- Why did CDC select Kaiser Permanente as the partner for the investigation?
- Who will be eligible to participate in the investigation?
- How long will the investigation take? New
- Will the investigation include treatment for participants? New
- May I send samples to the CDC laboratories for confirmation of this condition?
- Can you advise on the steps that I should take to report this condition to CDC?
- Does CDC plan to expand the investigation to other locations or include other persons who may be affected with this condition?
- If I have more questions about CDC's investigation, what should I do?
Why did CDC select Kaiser Permanente Northern California as the partner for the investigation?
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. There are several factors that led CDC to select Kaiser Permanente Northern California as the partner in this investigation. First, 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 will allow a systematic method of identifying persons who may have this condition.
Who will be eligible to participate in the investigation?
Participant selection will follow a set protocol, and not all persons who identify themselves as having signs or symptoms of this condition will be eligible to participate in the investigation. If you are identified as eligible to participate, you will be contacted by the study staff members. To be eligible, one must reside in the Northern California area, be at least 13 years old, have been a health plan member of Kaiser Permanente Northern California during July 2006 through December 2007, and have compatible signs and symptoms of the condition as described in the investigation protocol.
How long will the investigation take?
The investigation will occur in phases with an estimated timeframe of 12 months or longer to complete the entire investigation.
During the first part of the study, the investigators will identify and recruit eligible study participants and collect detailed information on participants' symptoms and potential factors/exposures that may contribute to the condition.
In the second part of the study, eligible participants will undergo detailed clinical evaluations. Not all clinical evaluations will be conducted on the same day. The clinical evaluations began in May 2008.
Will the investigation include treatment for participants?
No, this study will not involve treatment. However, eligible participants will receive detailed clinical evaluations, including a general medical examination, a dermatology examination, a mental health examination, skin biopsies, and multiple blood tests.
CDC does not maintain a referral list of providers and can not refer patients to specific health care providers. However, persons seeking treatment for a medical condition may be able to identify an appropriate physician in their area by using online physician locators that have been established by professional medical societies such as the American Medical Association or the American Academy of Dermatology.
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 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 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 investigation to other locations or include other persons who may be affected with this condition?
The current investigation will be limited to Northern California and to persons who meet the study's eligibility criteria. Decisions regarding future studies will be determined based on the findings of this investigation.
If I have more questions about CDC's investigation, what should I do?
Inquiries regarding this investigation 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.
Content Source: National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)