Registration Now Open for the for the 2014 WHI Annual Investigator Meeting
Please click here for registration information. The meeting will be held May 1-2, 2014, in Seattle, WA. Registrations will be accepted through Monday, April 28 at noon PT.
New WHI Data Release – Feb 2014
A new release of the WHI investigators’ datasets was published February 28, 2014. New data in this release include (1) Heart Failure data adjudicated by UNC on Hormone Trial, African American, and Hispanic participants (forms 135 and 136), and (2) and the Short Physical Performance Battery scores on Long Life Study participants (Form 301). A review of the supporting documentation, particularly the WHI Data Preparation and Use document, is recommended prior to using WHI data.
Feb 2014 Congratulations to Dr. Marian Limacher who was honored for her work in women’s health at the Gainesville Heart Ball by the Alachua Division of the American Heart Association. Dr. Limacher has served as a Principal Investigator for the Women’s Health Initiative since 1994.
Jan 2014 Congratulations to WHI scientist Chloe E. Bird, PhD, who was appointed Editor-in-Chief of Women’s Health Issues effective January 1, 2014! Dr. Bird, a Senior Sociologist at RAND and Professor of Sociology and Policy Analysis at Pardee RAND Graduate school, has authored several WHI publications, focused primarily on the impact of neighborhood factors on health. Her latest, a commentary on continuing the WHI, was published this month in Women’s Health Issues and is summarized below.
Will extending the Women’s Health Initiative lead to better research and policy?
The longitudinal follow-up of the WHI cohort has already yielded hundreds of breakthrough findings on women’s health and health care, including the effects of estrogen and progestin on a large range of outcomes, from cardiovascular disease to dementia. An increasingly large and diverse group of researchers are using WHI data to assess an expanding array of women’s health behavior and conditions. In this time of limited resources for research, obtaining support to continue the Women’s Health Initiative may be difficult, and questions have arisen as to the potential and relative value of extending the cohort follow-up beyond 2014, now that the majority of women are in or beyond their late 60s and on Medicare. However, continuing the follow-up of the WHI cohort can inform health care and policy decisions and research in countless ways:
The geographic diversity of the cohort offers a unique opportunity to assess how variations in women’s lives and circumstances contribute to their health and longevity as they age. For example, what household and community factors are associated with physical activity and exercise, and can these factors be supported through local policies and programs? WHI data, collected nationwide, can inform healthy aging policy and community programs in a way that smaller studies, particularly those confined to a particular geographic area, cannot.
Social and economic costs are growing rapidly as our population ages, with the corresponding decline in health and physical functioning. These factors are particularly relevant to research on women, who outnumber men in the oldest cohorts. Key policy questions, such as what individual and community factors and policies facilitate older women’s ability to “age in place”, may be answered by following WHI women into older age. The WHI is unique in providing the longitudinal health data needed to assess how health trajectories play into decisions about living arrangements and whether particular health behaviors or factors can potentially prevent decline and enable women to continue to live on their own.
Continued follow-up of the WHI cohort can help answer questions regarding which types of programs and medical care are most effective for maintaining health and health-related quality of life throughout the aging process. These national data provide a unique opportunity to inform a wide range of state and federal policy decisions with potentially substantial economic benefits to both women and tax payers; conversely, the costs of failing to fund the continued follow-up of this unique cohort may represent an irrecoverable loss.
WHI is potentially at risk, not just because of the lack of funding resulting from sequestration, but because of the lack of Institute devoted to either Women’s Health or to Sex/Gender and Health at the NIH. While some will argue that research and an institute specific to women’s health is not necessary, differences in men’s and women’s biology and the social and biological pathways that lead to their health trajectories substantiate the need for a more systematic evaluation of whether research findings apply similarly to women’s and men’s health.
WHI bids fond farewell to Nancy Morris - Dec. 2013
WHI bids a fond farewell to Nancy Morris
New WHI Data Release - Dec. 2013
who is retiring in January after two decades of support to the study. Nancy, who has a business background, joined government service for the great health benefits and luckily found her way to the WHI, where she served as a program analyst at the Women's Health Initiative branch of NHLBI. In fact, Nancy was the very first employee to be hired by WHI. Nancy and her husband Rick are building a house in North Carolina where they will enjoy their retirement together. She is an avid golfer and completed her first marathon at age 50, finishing in less than five hours. On behalf of the WHI investigators, we want to thank Nancy for all of her efforts and we wish her the best.
A new release of the WHI datasets was published December 4, 2013, and uploaded to this site on December 5, 2013. A review of the supporting documentation, particularly the WHI Data Preparation and Use document, is recommended prior to using WHI data.
New WHI Steering Committee Chair - Oct. 2013
Jean Wactawski-Wende, PhD is an epidemiologist who has been an active principal investigator in WHI for more than 20 years. She currently serves as PI of the Northeast Regional Center and recently assumed a new role as the WHI Steering Committee Chair. In addition to her dual roles within WHI, Jean also serves as University at Buffalo’s vice provost for strategic initiatives as well as professor and associate chair of the Department of Social and Preventive Medicine at UB.
NIH awards include use of WHI data to study disease-related variations
The National Human Genome Research Institute, a branch of the National Institutes of Health, has granted five research teams, including a team at Fred Hutchinson Cancer Research Center, to study the genomics of disease susceptibility in ethnically diverse populations. Co-principal investigators Drs. Charles Kooperberg and Ulrike “Riki” Peters will compare the DNA of the Women’s Health Initiative participants to the DNA sequences of approximately 350,000 rare gene variants that are associated with a variety of chronic diseases and conditions such as high blood pressure, inflammation, high glucose, insulin resistance and high cholesterol, in addition to common diseases such as cancer, diabetes and heart disease. See more details in the NIH press release
Results from the WHIMSY Study: No Long-Term Effects on Cognitive Function of Postmenopausal Hormone Therapy Prescribed to Women Aged 50-55 Years - Jun. 24, 2013
The Women’s Health Initiative Study of Memory in Younger Women (WHIMSY) studied participants who were enrolled in the WHI Hormone Trials to assess the impact of hormone therapy (specifically, conjugated equine estrogens) on cognitive functioning when taken by postmenopausal women aged 50-55. The principle finding of this study was that hormone therapy did not affect overall cognitive function or any of the specific elements measured that formed the assessment of cognitive function. Click here for link to the FAQ.
SharePoint Training Materials for Site Contributors - Apr. 11, 2013
The upkeep of this site requires the effort of many from throughout WHI. If you are active in contributing to the content of this site, please take a moment to review our new SharePoint training materials.
Searchable list of variables - Nov. 14, 2012
Looking for a particular data item and don’t know where to find it? Try the new Searchable list of dataset variables. The search function will help you locate the appropriate files for download.
This search supports partial-text queries. For each data item found, the search will return information such as the Data Category, File Description (e.g., form number and name), SAS name and label, and description of the question. You can also see a full listing of the variables and descriptions.
The search includes data items up through 2010, but does not include ancillary study data items. Laboratory data are not included in this search; instead click here for lab data, including ancillary study lab data.
WHI Publishes Global Paper on Hormone Trial Findings
On October 2, WHI investigators, led by
Dr. JoAnn Manson, published a comprehensive article on the overall findings of the two WHI hormone trials in the Journal of the American Medical Association (JAMA) (our Publication of the Month). Although most of these results have been previously published, they appeared scattered in nearly 120 papers. These prior reports were generally more focused analyses, showing the effects of one of the two types of hormones tested on one specific disease or health condition in isolation. Now, for the first time, WHI is presenting all of the major health effects of hormone therapy in one document, with side-by-side comparisons of Estrogen-plus-Progestin and Estrogen-Alone for cardiovascular disease, cancers, fractures, diabetes, gall bladder disease, and several quality of life measures, both during the trials and several years after participants stopped taking study hormone pills. Secondary analyses also show results by age group at time of WHI enrollment.
An editorial, written by Dr. Elizabeth Nabel, President of Brigham and Women’s Hospital in Boston and Former Director of the National Heart Lung and Blood Institute, accompanied the WHI report. Entitled “The Women’s Health Initiative—A victory for women and their health”, Dr. Nabel briefly recounted the history of the program and the many lessons learned. “The history of medicine abounds with dogmas assumed and later overcome. Nowhere is that dynamic more evident than in women’s health, ” she states. In fact, “Twenty-two years following its inception, the WHI is a model for publicly funded rigorous, thorough, and objective clinical trials that have broadly affected human health. “
On October 29, WHI will celebrate the 20th anniversary of the first woman to be enrolled in WHI. This compendium of data, one of the largest papers every published by JAMA, is a wonderful tribute to our participants and provides an opportunity to acknowledge again the 160 000 women of WHI who gave so much to help data triumph overcome dogma.
More information is available by viewing the Executive Summary and Questions and Answers.
2013-2014 WHI Matters
Over the next year, participants will be receiving a new issue of the participant newsletter WHI Matters in the mail. This issue includes articles on What’s New in WHI, update on the Long Life Study, description of the new LILAC study, Focus on Findings, and Letters to the Editor. You can see an advance copy of the newsletter by clicking here.
Exciting New Study! Life and Longevity after Cancer (LILAC) Study
More than 20,000 women have been diagnosed with cancer since they joined the WHI. The LILAC study aims to learn more about cancer treatments and their effects on the lives and health of women. The LILAC study will include women diagnosed with breast cancer, colorectal cancer, lung cancer, endometrial cancer, ovarian cancer, melanoma, leukemia, and lymphoma. In July, the Clinical Coordinating Center will begin mailing to about 10,000 current WHI participants who have had a diagnosis of cancer. This mailing will include a letter about the study, a consent form, a tissue and medical records release form, and a LILAC questionnaire with questions about you during and after cancer treatment.
If you join the LILAC study, we will ask you to fill out the questionnaire and give us permission to review your medical records and tumor tissue related to the cancer. This valuable information will help us learn more about cancer treatment and may help improve the lives of women in the future.
If you have any questions about the LILAC study, please call the toll free message line 1-855-332-1930.
WHI Finding: Risk of Lung Cancer Death Has Risen Among Women Smokers
A new study published in the Jan. 24,
2013 issue of the New England Journal of Medicine (NEJM) reveals that female smokers have a much greater risk of dying from lung cancer and chronic obstructive lung disease (COLD) in recent years than did female smokers 20 or 40 years ago. The study was conducted by Michael Thun, MD., and several
colleagues, including Ross Prentice, PhD, one of the Principal Investigators of the Women’s Health Initiative. They studied smoking patterns and smoking-related deaths over a 50 year period, using data from five large studies, including the Women’s Health Initiative. In total, the study included more than 2.2 million adults 55 years and older; of those, 156,701 were WHI participants who provided updated information on smoking in 2000.
This increased risk of dying from smoking-related diseases reflects the change in women’s smoking habits. Compared with women in previous generations, women smokers today smoke more like men, that is, they start earlier in adolescence and until recently, smoke more cigarettes per day (smoking peaked in the 1980s). These findings strongly confirm the prediction that “if women smoke like men, they will die like men.”
For women who smoked in the 1960s, the risk of dying from lung cancer was 2.7 times higher than it was for women who had never smoked. In the cohort of women smokers studied from 2000-2010, the risk of dying from lung cancer was 25.7 times higher than that of never-smokers. The risk of dying from COLD for women smokers was 4.0 times higher than for never-smokers in the 1960s; the risk in the current cohort of smokers was 22.5 times higher than never-smokers. About half of the increase in risk occurred during the last 20 years. “The steep increase in risk among female smokers has continued for decades after the serious health risks from smoking were well established, and despite the fact that women predominantly smoked cigarette brands marketed as lower in “tar” and nicotine,” said Dr. Thun.
These findings show that disease and death caused by cigarette smoking increases progressively over many decades, peaking fifty or more years after the widespread start of smoking in adolescence. This has a profound implication for developing countries with large populations, where rates of cigarette smoking are on the rise for both men and women. In a related article in the same issue of the NEJM, Dr. Prabhat Jha and his colleagues note that based on current trends, smoking will kill 1 billion people in the 21st century, as opposed to ‘only’ 100 million in the 20th century.
A positive finding of these studies was the confirmation that quitting smoking at any age dramatically lowers death from all major diseases caused by smoking, and that quitting smoking is far more effective than reducing the number of cigarettes smoked. Smokers who quit by age 40 were found to avoid nearly all of the excess smoking-related mortality from lung cancer and COLD. “The good news is the benefits of smoking cessation occur much more quickly and are substantial at any age,” notes Dr. Thun.
Thun MJ, Carter BD, Feskanich D, Freedman ND, Prentice R, Lopez AD, Hartge P, Capstur SM (2013). 50-year trends in smoking-related deaths in the United States. NEJM, 368(4); 361-374.
Looking Back on WHI - July 2012
10 year anniversary of the WHI Hormone Trial results
Dr. Vivian Pinn, former director of the Office of Research on Women's Health, recently gave
her thoughts about WHI and the data it is still providing. See a short video with her reflections that was recently posted on the ObGyn news digital network, click here
Genome Wide Association Studies
When you joined the Women’s Health Initiative many years ago, you may recall providing blood samples at your clinical center visits. By the end of the original phase of the study, over 3 million blood samples had been collected and stored in freezers! Those specimens are adding to our knowledge about women’s health and disease in many important new ways. One of the most significant ways may come from using those stored blood samples as part of a Genome Wide Association Study, or “GWAS” for short. A GWAS is a study that looks at the DNA of WHI participants by using the specimens of those who consented to having their blood used in genetic studies. These studies (which do not link your blood to your identity) may help scientists find out what genetic factors are associated with diseases such as diabetes, hypertension, heart disease, osteoporosis, cancer, and dementia.
What is the purpose of a GWAS?
The WHI GWAS examines the genome, which is the individual’s complete set of DNA, of women who have participated in WHI to see if there are genetic variations associated with a particular disease. To do this, the genomes of women with a particular disease are compared to similar women without the disease. If certain genetic variations are seen in participants with the disease compared to those without, the variations are said to be "associated" with the disease. The genetic variations themselves do not necessarily cause the disease, but may put individuals with the variant at increased risk. Other influences (diet, smoking, environment) may also be important factors that work along with genetic variations to influence risk. Once new genetic associations are identified, it may be possible to use the information to detect, treat, and prevent the disease. We hope to learn much more about this using the WHI blood samples.
Is each person’s genome unique?
Humans come in many shapes and sizes, but we’re all very similar at the genome level. In fact, the genomes of any two people are more than 99% the same. However, the tiny fraction of the genome that varies among humans is what makes each person unique, for example, in terms of characteristics such as eye, skin, and hair color. These types of variations also influence the risk for developing certain diseases. We hope to learn more on how these variations influence which women get certain diseases and which women do not.
Is everything determined by my DNA?
No, DNA is just one piece of the puzzle. When it comes to your health, lifestyle and environmental factors, such as the food you eat and pollutants in the air you breathe, may also play a role. Once we learn more about how genomes interact with these lifestyle and environmental factors to cause disease, we may be able to change our lifestyle habits or adapt our environment to lower our risk. Since we get our DNA from our parents, risk of certain diseases and other characteristics run in families. For most common diseases, such as cancer, diabetes, and heart disease, researchers are finding that multiple genes—along with lifestyle and environmental factors—work together to determine the risk of these and other disorders.
What will genome research mean for me?
Over time, genetic tests may become available to predict risk for developing many common health conditions. Based on the information contained in a person’s genome, healthcare providers may be able to develop strategies that are more specific to you for detecting, treating, and preventing disease. For example, if a genetic profile shows that you are at increased risk for colon cancer, you might undergo more frequent colonoscopy screening or be asked to make certain dietary changes.
GENETIC STUDIES MAY ENHANCE HEALTH CARE
Genetic studies help us understand the link between genes and certain diseases. This research is in progress, and already includes health studies looking at genetic variations associated with:
• health of African American and Hispanic women who joined WHI
• health outcomes of women who were in the Hormone Therapy program
• risk of hip fractures
• risk of pancreatic and other less common cancers
• risk of colorectal cancer
• risk of strokes
• gene-environment interactions
• memory and memory decline
As time goes on, many other associations will be tested, including those factors associated with healthy aspects of aging. The blood samples you provided early in the study, as well as the information you provided over the years and continue to provide annually through the mailed questionnaires, are helping scientists make major contributions to this growing area of research. We really appreciate all you’ve given and continue to give as an ongoing participant in the WHI!
Upcoming WHI Opportunities
WHI researchers are always thinking of new ways to increase knowledge and understanding of factors that influence women’s health. Some of these ideas involve new add-on studies that will increase what we are already learning from the data being collected from WHI participants.
As a WHI participant, you may be asked if you would be interested in joining one or more of these studies. Many of you have already joined some of these studies, which have covered topics including memory and macular degeneration (eye disease). Several other new studies are being developed that you may be invited to join, including one that involves collecting additional blood specimens and physical function data at an in-person visit that may be conducted in your home, and another that looks at use of Vitamin D supplements. If you are ever invited to join a study related to WHI, we will ask for your consent to join. We certainly welcome your participation, as having many women helps make the results apply to a broader group of women. However, please be assured that you always have the right to say no if you do not wish to join these additional studies. Whether you join or not, it will have no impact on your current participation in the WHI. The contributions you are already making have had a huge impact and will continue to lead to additional answers about women’s health!
Publication of the Month
Opportunities for scientific collaborations
Investigators not previously associated with WHI have the opportunity to use the WHI resource for scientific activities. The primary route involves collaborating with an existing WHI investigator who will serve as a sponsor, orienting a new investigator to both the data and specimen resources and to the process for obtaining access and approvals as well as participating in the scientific process. Potential sponsors may be found at WHI Investigators
There are two basic types of activities that a researcher may pursue:
1) A manuscript proposal that seeks to analyze existing data,
2) An ancillary study, which proposes to collect additional data either directly from the participant or indirectly (e.g., from linkage to another dataset or through analysis of WHI biospecimens).
A description of the available data may be found at WHI data here
and the biospecimen resource is described here
. Manuscript proposals are reviewed by the WHI Publications and Presentations Committee (P&P) twice per month. Ancillary study proposals are reviewed by the Ancillary Study Committee monthly. Guidelines and forms for submission for each may be found under the link "Write a Paper
" or "Propose a Study
" on the left side of this page.
Non-WHI investigators may also be interested in participating in one or more of WHI's Scientific Interest Groups
(SIGs). The SIGs meet by conference call regularly to share information, stimulate ideas, and coordinate scientific activities in line with their mutual interests. You need not be a WHI investigator to participate in a SIG.
Investigators may use the WHI data independently of the WHI investigators. Please visit the NHLBI website for instructions to gain access to archived WHI data through the NHLBI BioLINCC