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Health Survey and Study (FAQs)

  1. Why was the survey of specific childhood cancers and birth defects done? What is its purpose?
  2. What conclusions can I draw from the survey findings?
  3. How can I follow the study ATSDR is proposing to conduct?
  4. Why aren't you studying all diseases? I have a health problem that you are not studying, and I want to get help (or compensation) too.
  5. Why is the planned epidemiologic study focusing only on a few birth defects and not studying my birth defect? Why aren't you studying all birth defects?
  6. Why doesn't the survey or study cover people who lived at Camp Lejeune prior to 1968?
  7. What if people want to participate in the survey but haven't been contacted? / I believe I'm eligible for the survey. How do I participate?
  8. My child has one of these conditions (cancer or birth defect listed below) and I didn't participate in the survey. Can I participate in the study?
  9. I participated in the survey. Will I be included in the study?
  10. I participated in the survey several years ago, but haven't heard anything about it since then. What were the results of the survey?
  11. What stage is the study in now? When will it be completed?
  12. Specifically, what are the birth defects or childhood cancers that ATSDR is considering in its study?
  13. What is ATSDR doing to get the relevant medical records of the 57 children who had birth defects or contracted childhood cancer but have not provided those records? Will you have enough information to make informed decisions and provide additional information?
  14. Now that the survey is completed, when will the study begin? How long will it take?
  15. Under what authority was this survey/study authorized?
  16. How was the survey funded?
  17. How much did the survey cost?
  18. How much will the proposed epidemiological study cost?
  19. What is ATSDR?
  20. Did the U.S. Marine Corps cooperate with the ATSDR survey?
  21. Specifically, how did the Marine Corps contribute to the survey?
  22. What is the relationship between ATSDR and USMC? Since they're both part of the federal government, isn't there a conflict of interest?
  23. Where can I get more information regarding the survey or study?
  24. Has any other work been done by ATSDR regarding Camp Lejeune?

I. Purpose

1. Why was the survey of specific childhood cancers and birth defects done? What is its purpose?

Environmental data from U.S. Marine Corps Base Camp Lejeune were reviewed by the Agency for Toxic Substances and Disease Registry (ATSDR) as required by the Comprehensive Environmental Response, Compensation, and Liability Act, also known as the Superfund Law.

ATSDR conducted a public health assessment (PHA) at Camp Lejeune in 1997. In that study, ATSDR found a possible problem with the levels of chemicals that had been found in drinking water at Camp Lejeune prior to 1985. Research indicates that these chemicals, called volatile organic compounds (VOCs), may cause adverse health effects in persons exposed while in utero (in the womb).

Therefore, ATSDR conducted a survey to identify potential cases of birth defects and childhood cancers. To conduct the survey, ATSDR located and interviewed women who were pregnant while living in on-base housing at Camp Lejeune any time from 1968 to 1985.

The ATSDR survey was a required first step in a multi-step process to study the potential effects of VOCs in drinking water on children who may have been exposed to the VOCs before birth. On its own, the survey cannot assess potential effects.

2. What conclusions can I draw from the survey findings?

The survey is not designed to draw or suggest any conclusions. Instead, the survey represents a snapshot of certain health information regarding children born to people who lived on Camp Lejeune during the 17-year period of 1968 - 1985. ATSDR's planned next step is to use modeling and other techniques to study whether the tainted drinking water may be associated with the health problems identified in the survey.

3. How can I follow the study ATSDR is proposing to conduct?

Periodically check the ATSDR Web site, www.atsdr.cdc.gov. Any updates to the proposed study will be posted on this site. If the study is approved, however, the results will not be finalized and released earlier than summer 2006.

II. Eligibility

4. Why aren't you studying all diseases? I have a health problem that you are not studying, and I want to get help (or compensation) too.

We hope this study will help us understand what happened at Camp Lejeune and help prevent these exposures and diseases so that other people will not have to go through what you have gone through.

Unfortunately, an epidemiologic study cannot accurately evaluate all diseases at once. A scientifically credible study must limit its focus to diseases that it can reliably identify and confirm. This way, the study can avoid several serious errors and produce useful and accurate data.

A disease is often most clearly identifiable and confirmable in those most vulnerable to it. On the basis of current scientific literature, and because the fetus is the most sensitive to contaminated drinking water, ATSDR decided to focus on diseases that might occur in fetuses exposed to the contaminated drinking water at Camp Lejeune.

In other words, the health effects we plan to study are obvious at birth. If children who have them were ALSO exposed to the contaminated water - and this exposure can be verified - we MAY have identified a scientifically reliable and useful pattern. On the other hand, if we don't find a link between the drinking water contaminants and the specific problems we are studying in fetuses, we would probably be able to rule out links with other diseases.

Many of the base housing units received drinking water during the study period that was not contaminated. The environmental data on the base's drinking water is not yet complete, however. Part of ATSDR's epidemiologic study will include computer modeling of the entire Camp Lejeune water system to determine which base housing units received contaminated water during 1968-1985 and which did not.

If you believe you have been harmed by drinking contaminated water at Camp Lejeune, you may seek assistance from the U.S. Marine Corps or through the legal system. ATSDR is not, however, involved in providing medical or legal services.

5. Why is the planned epidemiologic study focusing only on a few birth defects and not studying my birth defect? Why aren't you studying all birth defects?

The planned study will focus on four birth defects (anencephaly, spina bifida, cleft lip, and cleft palate) and two childhood cancers (leukemia and non-Hodgkin's lymphoma). We chose to study these four birth defects and two cancers, and not other diseases, because two previous studies suggest that the chemicals in some of the drinking water supplies at Camp Lejeune during 1968-1985 might cause these four birth defects. Similarly, three previous studies that suggest these chemicals in drinking water might cause childhood leukemia.

ATSDR had hoped to study additional birth defects. However, we found that the survey could not reliably identify other birth defects besides the four we are studying. For example, we were not getting all of the reports we expected for serious eye and heart defects. The same was true for other types of birth defects.

Most often, studies of birth defects do not use a survey to identify cases. Studies of birth defects are usually either hospital-based (i.e., the study is done using records from local hospitals that serve the study area) or are based on a statewide birth defects registry. Unfortunately, North Carolina did not have a birth defect registry during 1968-1985. We could not perform a hospital-based study of birth defects because during 1968-1985 an estimated 4,000 pregnant women transferred from Camp Lejeune before giving birth. The four birth defects we are studying are obvious at birth, and we believe we have identified most, if not all, of them through the survey. It is not practical to study other birth defects if we cannot identify all or most of them and confirm them by medical records. Such a study would not be valuable because it would not provide reliable information.

6. Why doesn't the survey or study cover people who lived at Camp Lejeune prior to 1968?

ATSDR began both the survey and plans to begin the study at 1968 because computerized records for those born in North Carolina are not available prior to 1968. The survey period ended in 1985, the year the contaminated wells were shut down.

If you fall outside those years but feel that you or a family member is affected, you may want to follow the study that ATSDR is conducting. Study findings will also apply to the group of individuals who had or have the same conditions and who were, according to water distribution models, exposed to contaminants - even if they did not participate in the survey.

7. What if people want to participate in the survey but haven't been contacted? / I believe I'm eligible for the survey. How do I participate?

The survey is closed. Data collection for this survey officially closed on January 26, 2002. Only people who were pregnant while living at Camp Lejeune any time from 1968 to 1985 were eligible for that survey. You can, however, send ATSDR your concerns in a letter stating when you were at Camp Lejeune, the person you are concerned about, and information regarding the health concerns. If another survey is conducted, the information you provide may help determine which health concerns to include in the survey. Please send information to the following address:

Camp Lejeune Survey
1600 Clifton Road, NE
Mailstop E-31
Atlanta, GA 30333

You may also want to follow the study that ATSDR is conducting. Study findings will also apply to the group of individuals who had or have the same conditions and who were, according to water distribution models, exposed to contaminants - even if they did not participate in the survey.

8. My child has one of these conditions (cancer or birth defect listed below) and I didn't participate in the survey. Can I participate in the study?

You may be able to participate in the study if you fall into both of the following categories:

1) You were pregnant or had a child born while living on Camp Lejeune during 1968 - 1985, AND
2) Your child has or had one of the following conditions:

  • Childhood leukemia
  • Childhood non-Hodgkin's lymphoma
  • Spina bifida
  • Anencephaly
  • Cleft lip
  • Cleft palate
If you meet both conditions, you may send ATSDR your concerns in a letter stating when you were at Camp Lejeune, the person you are concerned about, and information regarding the health concerns. Please send information to the following address: Camp Lejeune Survey
1600 Clifton Road, NE
Mailstop E-31
Atlanta, GA 30333

9. I participated in the survey. Will I be included in the study?

If your child was diagnosed with any of the following conditions - childhood leukemia, childhood non-Hodgkin's lymphoma, spina bifida, anencephaly, cleft lip or cleft palate - you will be contacted about taking part in the study.

A sample of children who did not have any of the conditions listed above will also be asked to take part in the study. We do not yet know who will be included in this group.

III. Status and Results

10. I participated in the survey several years ago, but haven't heard anything about it since then. What were the results of the survey?

The results are still being studied. However, ATSDR's Progress Report on the survey (the first phase of the Lejeune study) was released on July 16, 2003.

Data collection for the survey ended on January 26, 2002. Data analysis was conducted and a group of individuals were found to have either the childhood cancers or birth defects that ATSDR was searching for in this survey. Those individuals were then sent a packet containing a medical records release form and a form that requested a list of all physicians that either diagnosed or could confirm the condition(s) in question.

11. What stage is the study in now? When will it be completed?

The study design is now being finalized and approved. To determine whether it was appropriate to do a study, ATSDR first conducted a survey of the parents of children who were in utero while their mothers were living in Camp Lejeune base housing during the 196885 period. Of the 12,600 children located, 103 had possible birth defects or childhood cancers of concern as reported by parents.

ATSDR then sought permission of the parents (or of the children themselves if they were over 18) to review medical records to confirm the health problems reported.

To date, ATSDR has received medical records for 46 of the 103 children. ATSDR is currently seeking the medical records of the remaining 57 children. The survey provided enough information to justify planning an epidemiological study. The study will require the computer modeling of the Camp Lejeune drinking water system over the period of 1968 - 85 to determine as accurately as possible which mothers were exposed to volatile organic compounds (VOCs) in drinking water during their pregnancies and which mothers were not.

Until the epidemiological study is completed, it cannot be determined whether exposure during pregnancy to drinking water containing VOCs at Camp Lejeune is associated with increased risks of specific birth defects and childhood cancers.

12. Specifically, what are the birth defects or childhood cancers that ATSDR is considering in its study?

They include the following:

  • Neural tube defects (spina bifida, anencephaly)
  • Oral cleft ( cleft lip, cleft palate)
  • Childhood leukemia
  • Non-Hodgkin's lymphoma

13. What is ATSDR doing to get the relevant medical records of the 57 children who had birth defects or contracted childhood cancer but have not provided those records? Will you have enough information to make informed decisions and provide additional information?

ATSDR is still working to obtain medical records it has received permission to review. ATSDR researchers are also working to acquire the needed permission to review the additional records.

14. Now that the survey is completed, when will the study begin? How long will it take?

Many steps must still be completed before ATSDR begins the study. These include designing the study, as well as obtaining outside scientific review and approval by the federal Office of Management and Budget and Human Subjects Review. All these processes must be completed before the study begins. Assuming the study is approved, the data collection and analysis should take about 18 months.

IV. Funding and Authority

15. Under what authority was this survey/study authorized?

Section 104(I) (6) (B) of the Comprehensive Environmental Response, Compensation, and Liability Act (CERCLA), P.L. 96-510. This is also known as the Superfund Law. The survey was also approved by the federal Office of Management and Budget (OMB) and announced in the Federal Register.

16. How was the survey funded?

ATSDR conducted the survey with funds from Superfund and the U.S. Marine Corps.

17. How much did the survey cost?

Approximately $3.5 million.

18. How much will the proposed epidemiological study cost?

It is estimated to cost $2 million.

V. ATSDR and the U.S. Marine Corps

19. What is ATSDR?

ATSDR is an independent agency under the U.S. Department of Health and Human Services. The agency is a federal public health agency assessing potential human health effects of hazardous substances found at or near toxic waste sites.

ATSDR performs hundreds of health consultations, assessments and studies annually to fulfill responsibilities under the Superfund Act and in response to requests by the public, other federal agencies and state and local governments.

20. Did the U.S. Marine Corps cooperate with the ATSDR survey?

Yes, the Marine Corps assisted ATSDR by informing active duty personnel about the survey and by helping reach possible participants through the mass media. The USMC also helped locate active duty personnel eligible for the survey.

21. Specifically, how did the Marine Corps contribute to the survey?

The Marine Corps assisted ATSDR with its survey by participating in a media campaign and by answering questions from Marines/former Marines and their families about the survey process. The Marine Corps also funded a portion of the ATSDR survey work.

22. What is the relationship between ATSDR and USMC? Since they're both part of the federal government, isn't there a conflict of interest?

ATSDR is an independent agency under the U.S. Department of Health and Human Services. The agency is a federal public health agency that assesses potential human health effects of hazardous substances found at or near toxic waste sites.

Because people were concerned about a conflict of interest, the Superfund law made ATSDR responsible for consults, assessments, and studies at toxic waste sites - including those found on property owned by other parts of the government, in this case the U.S. Marine Corps. Although the USMC has cooperated in the process so far, the planned study will be an ATSDR study and will remain independent of the Marine Corps.

23. Where can I get more information regarding the survey or study?

Please explore this Web site or contact ATSDR by telephone toll-free at 1-888-42-ATSDR (1-888-422-8737) or by e-mail to learn more. You may also wish to contact the U.S. Marine Corps by telephone at 1-877-261-9782 or by e-mail at CLSurvey@hqmc.usmc.mil. The USMC also has a website: www.usmc.mil/camplejeune/clbwatersurveyinfo.nsf.

24. Has any other work been done by ATSDR regarding Camp Lejeune?

Yes. ATSDR completed a public health assessment (PHA) at Camp Lejeune in 1997 that led to the survey and the upcoming study. A health study of the camp's drinking water was also done in 1998. These documents can be found on-line at www.atsdr.cdc.gov/sites/lejeune/previous_work.html

 
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