Appendix K
Web Site Contents & Frequently Asked Questions (FAQs)
Hurricanes Katrina and Rita Housing Exposures (KARHE) Registry
Public Web Site Contents
Hurricanes Katrina and Rita Housing Exposures Registry
Suggest adding a “key points” section
People who lived in trailers furnished by FEMA after Hurricanes Katrina and Rita are concerned and want to find out whether living or staying in the trailers has harmed their health. To address these concerns and look for answers, ATSDR is creating the Katrina and Rita Housing Exposures (KARHE) Registry. A registry is a list of people with something in common. Health registries can help us understand changes over time in the health of people who may have certain diseases, or who may have been exposed to substances that might be harmful.
ATSDR will enroll up to 5,000 people from Louisiana, Mississippi, Texas, or Alabama who lived or stayed in FEMA trailers after the hurricanes. RTI International will help ATSDR contact people who could be enrolled in the Registry.
Enrolling in the Registry will take about 30 minutes. You will be asked questions about the type of trailer you stayed in, how much time you spent there, and your health.
We will respect your privacy and keep all information about you safe and secure. We will never link your name with your information.
Homepage
Welcome to the Hurricanes Katrina and Rita Housing Exposures (KARHE) Registry Web site!
The Agency for Toxic Substances and Disease Registry (ATSDR), a federal health agency of the U.S. Department of Health and Human Services, is asking you to help create the KARHE Registry. A registry is a list of people with something in common. Health registries can help us understand changes over time in the health of people who may have certain diseases, or who may have been exposed to substances that might be harmful. The KARHE Registry is a health survey of people who lived or stayed in trailers furnished by the Federal Emergency Management Agency (FEMA) after Hurricanes Katrina and Rita. The Registry will help us learn about possible health effects caused by living or staying in these trailers.
The KARHE Registry is ATSDR’s first step in creating a health registry of people who lived or stayed in FEMA trailers after Hurricanes Katrina and Rita. People who lived or stayed in the FEMA trailers may have been exposed to formaldehyde (pronounced as fawr-mal-duh-hahyd) or other air pollutants, and we want to find out if the possible exposures have made them sick.
About the KARHE Registry
The experiences, symptoms, and illnesses reported by the FEMA trailer residents will be recorded in the Registry.
ATSDR is contacting some of the trailer residents and asking them to take part in the KARHE Registry. ATSDR has asked RTI International to help contact people about the Registry.
People do not have to be sick to take part in the Registry. Both people who are healthy and people who are ill can take part in the Registry.
We will enroll in the Registry trailer residents who may have come in contact with air pollutants while they were in the trailers to find out if they have had ill health effects.
The KARHE Registry is the first step in creating a complete Registry of all people who lived or stayed in a FEMA trailer. Because many people left the area after the hurricanes, this first step will help us see if enough eligible people can be found, and if they are willing to be a part of the Registry. If this first step is successful, ATSDR may be able to begin a full registry that could include many more people.
Importance of the KARHE Registry?
Hurricanes Katrina and Rita damaged the U.S. Gulf Coast more than 5 years ago but the region is still feeling many of their effects. After the hurricanes, many homes were destroyed and families were moved into FEMA trailers. Since staying in the trailers, residents have been concerned about the health effects of possible exposure to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants from staying in the trailers.
In the years since the hurricanes, ATSDR and other Health and Human Services departments began working with FEMA to look into the health concerns of the trailer residents. The Registry will help us learn more about these concerns and how to help affected gulf coast residents. The Registry will be large and designing and planning it is not a simple task. The work done during this first step, the first 2 years of the Registry, will actually be a test to see if creating a full Registry, which will involve many more people, is possible.
Who Can Take Part in the KARHE Registry?
During this first step, up to 5,000 people from Louisiana, Mississippi, Texas, or Alabama who stayed in FEMA trailers after the hurricanes will be enrolled in the Registry.
RTI International will call people to ask if they will take part in the Registry. If you are eligible and agree to enroll, a Registry staff member will ask you some questions over the phone. The interview will take about 30 minutes. Some of the questions will be about:
the type of FEMA trailer you stayed in
family members or friends who shared the trailer with you
dates when you moved into and out of the trailer
number of hours per day or week you spent in the trailer
health conditions or symptoms you have had since you stayed in the trailer
Even if you have been healthy since you stayed in the FEMA trailer, we want you to take part in the Registry to help us understand the long-term health effects of possible exposures in the trailers.
Because this is the first step in creating the Registry, not every trailer resident affected by Hurricanes Katrina and Rita can be included. If this first step is successful, ATSDR may be able to begin a full registry that could include many more people.
Who Is Working With the KARHE Registry?
The Agency for Toxic Substances and Disease Registry (ATSDR), a federal health agency of the U.S. Department of Health and Human Services. ATSDR serves the public by using the best science, acting on public health needs, and providing trusted health information about harmful exposures and diseases related to toxic substances. We do this by learning how hazardous substances in the environment may affect public health. For more information about ATSDR, visit http://www.atsdr.cdc.gov.
RTI International is one of the world’s leading research institutes. Their goal is to improve the condition of the people of the world by turning knowledge into action. RTI International’s staff of more than 2,800 experts provides research and technical experience to governments and businesses in more than 40 countries. RTI International works in many areas including health and medicine, education and training, survey research, and energy and the environment. For more information about RTI International, visit www.rti.org.
The Louisiana Public Health Institute (LPHI) is a nonprofit organization that helps improve health outcomes. Their mission is to promote and improve health and quality of life by working with many partners including foundations, schools, community groups, community businesses, and parish and state governments. LPHI manages public health programs and helps develop health systems that promote health and prevent disease. LPHI also provides many services to meet the needs of local and national partner organizations. For more information about LPHI, visit www.LPHI.org.
We respect your privacy and we will keep all information about you and your family safe and secure. We will never link your name with your information, and nobody will be given your name or any other information that could identify you. All information published about the Registry will be written so that you and your family will not be identified.
Frequently Asked Questions (FAQs)
Q: What is the Katrina and Rita Housing Exposures (KARHE) Registry?
A: The KARHE Registry is a health survey of people who lived or stayed in trailers furnished by the Federal Emergency Management Agency (FEMA) after Hurricanes Katrina and Rita. A registry is a list of people with something in common. Health registries can help us understand changes over time in the health of people who may have certain diseases or who may have been exposed to substances that might be harmful. The Registry will help us find out if the people who lived or stayed in FEMA trailers have had any long-term health effects because they were possibly exposed to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants while staying in the trailers.
We will enroll in the Registry up to 5,000 people from Louisiana, Mississippi, Texas, or Alabama who lived or stayed in the FEMA trailers after Hurricanes Katrina and Rita. People who enroll will take part in a 30-minute phone survey and will be asked questions about their health and the time they stayed in the FEMA trailer.
Q: What is the purpose of the KARHE Registry?
A: We want to know if the FEMA trailer residents are having any long-term health effects. By enrolling in the Registry, you will play an important part in helping us understand the full effects of possible exposures to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants for people who stayed in the trailers.
Q: Hurricanes Katrina and Rita occurred in 2005, more than 5 years ago. Why is the Registry Important?
A: While it has been more than 5 years since Hurricanes Katrina and Rita damaged the U.S. Gulf Coast the region continues to experience many of their effects. After the hurricanes, many homes were destroyed and families were moved into FEMA trailers. Since staying in the trailers, residents have been concerned about the health effects of possible exposure to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants from staying in the trailers.
In the years since the hurricanes, ATSDR and other Health and Human Services departments began working with FEMA to look into the health concerns of the trailer residents. The Registry will help us learn more about these concerns and how to help affected gulf coast residents. The Registry will be large and designing and planning it is not a simple task. The work done during this first step, the first 2 years of the Registry, will actually be a test to see if creating a full Registry, which will involve many more people, is possible.
Q: Who can participate in the KARHE Registry?
A: Up to 5,000 people from Louisiana, Mississippi, Texas, or Alabama who stayed in FEMA trailers after Hurricanes Katrina and Rita will be enrolled in the Registry.
Because this is the first step in creating the Registry, not every trailer resident affected by Hurricanes Katrina and Rita can be included. If this first step is successful, ATSDR may be able to begin a full registry that could include many more people.
Q: What will I be asked to do if I agree to take part in the KARHE Registry?
A: RTI International will call people to ask if they will take part in the Registry. If you are eligible and agree to enroll, a Registry staff member will ask you some questions over the phone. The interview will take about 30 minutes. Some of the questions will be about:
the type of FEMA trailer you stayed in
family members or friends who shared the trailer with you
dates when you moved into and out of the trailer
number of hours per day or week you spent in the trailer
health conditions or symptoms you have had since you stayed in the trailer
Even if you have been healthy since you stayed in the FEMA trailer, we want you to take part in the Registry to help us understand the long-term health effects of possible exposures in the trailers.
If we call at a time that isn’t good for you, please tell us. We will be happy to set up a better time to talk with you. If you prefer, you can call our toll-free phone number, 1-xxx-xxx-xxxx, to enroll. All information will be kept private and secure.
Q: How long will it take to enroll in the KARHE Registry?
A: We expect the telephone interview will take about 30 minutes. Remember, if we call at a time that isn’t good for you, please tell us. We will be happy to set up a better time to talk to you. If you prefer, you can call our toll-free phone number, 1-xxx-xxx-xxxx, to enroll. All information will be kept private and secure.
Q: Do I have to answer all the questions you ask to enroll in the KARHE Registry?
A: No. You can refuse to answer any question that makes you uncomfortable and still be a part of the Registry.
Q: Why should I take part in the KARHE Registry?
A: If you take part in the Registry, you will play an important part in helping us understand the full effects of possible exposures to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants for all people who stayed in the FEMA trailers.
Q: Will I be paid for taking part in the KARHE Registry?
A: No. We cannot pay anyone for taking part in the Registry. However, by being part of the Registry, you will play an important part in helping us understand the effects of possible exposures to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants for all of the people who stayed in the FEMA trailers. The Registry will help us find out if the FEMA trailers affected the health of trailer residents.
Q: Will I risk losing my government benefits or social services if I take part in the KARHE Registry?
A: No. There is no risk of losing any government benefits or social services you receive. Taking part in the Registry cannot affect any benefits or services you receive.
We do not share any information about you or your family with any other organization or any government agency.
We respect your privacy and we will keep all information about you and your family safe and secure.
Q: Do I have to take part in the KARHE Registry?
A: No. We hope to enroll enough people to study the effects of possible exposures to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants for all people who stayed in the FEMA trailers. By joining the Registry, you can play an important part in helping us understand the full health effects of staying in the FEMA trailers.
Q: How do I know if I can take part in the KARHE Registry?
A: RTI International will call people to ask if they will take part in the Registry. Also, these people will receive a letter and brochure in the mail asking them to enroll in the Registry. If you know anyone who might be eligible for the Registry, please give them our toll-free phone number (1-xxx-xxx-xxxx) and our Web site (www.KARHE.org) so they can get more information.
Q: What is formaldehyde
A: Formaldehyde (pronounced as fawr-mal-duh-hahyd) is a common chemical in our environment. Formaldehyde can be found in:
Household items such as fiberglass, carpets, permanent press fabrics, paper products, and some household cleaners
Manufactured wood products used in new mobile homes
Cigarettes and other tobacco products, gas cookers, and open fireplaces
Smog
Exposure to low levels of formaldehyde may cause your eyes, nose, throat, or skin to become irritated. People with asthma may be more sensitive to formaldehyde if they inhale it. For more information on formaldehyde, please visit ATSDR’s website at: http://www.atsdr.cdc.gov/substances/toxsubstance.asp?toxid=39
Q: Who are the sponsors of the KARHE Registry?
A: The Agency for Toxic Substances and Disease Registry (ATSDR), a federal health agency of the U.S. Department of Health and Human Services is sponsoring the Registry. ATSDR serves the public by using the best science, acting on public health needs, and providing trusted health information about harmful exposures and diseases related to toxic substances. We do this by learning about the effects that hazardous substances in the environment may have on public health.
Q: Will my personal information be kept private if I enroll in the KARHE Registry?
A: We will respect your privacy and we will keep all information about you and your family safe and secure. We will never link your name with your information, and nobody will receive your name or any other information that could identify you. All information published about the Registry will be written so that you and your family will not be identified.
Q: How do I know my privacy will be protected if I enroll in the KARHE Registry?
A: Your privacy is the most important thing to the Registry staff. All Registry staff signed a privacy pledge and we take that pledge very seriously. Here are some examples of how we will protect your information:
We do not link your information with your name. We look at all of the information by groups of people, not specific individuals. You will never be identified in any report that uses information from the Registry. All information published about the Registry will be written so that you and your family will not be identified.
Only authorized staff and researchers will see your information. We will respect and protect your privacy and only let KARHE Registry staff and researchers see your information when it is necessary.
We will not share your name or any information you give us with any government agency. All information you give us will be kept private and will not be shared with any government agencies.
Q: Will you sell the information you collect for the KARHE Registry?
A: No. We will not sell anything that is part of the Registry, including information or results. This Registry is for research purposes only, to better understand the effects of possible exposures to formaldehyde (pronounced as fawr-mal-duh-hahyd) and other air pollutants for people who stayed in the FEMA trailers.
Q: Who can I contact if I have questions about the KARHE Registry?
A: To speak with a Registry staff member, please call our toll-free phone number, 1-xxx-xxx-xxxx, or e-mail us at: info@KARHE.org. If you call our toll-free phone number, a Registry staff member will call you back within 24 hours.
| File Type | application/msword |
| Author | Ariana Napier |
| Last Modified By | Sowell, Anne (ATSDR/DHS/OD) |
| File Modified | 2011-12-19 |
| File Created | 2011-12-19 |