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The Sister Study

Gardening is the most popular hobby- 31% of women report spending time on this activity.

What's New

Periodically we receive interesting media stories about the Sister Study and heartfelt stories from participants about why they continue to be a part of the study. We enjoy receiving these newsworthy items! Feel free to share with us and let us know if you would be willing to have your story featured on the website or in a future newsletter. Highlighting what has made participation in the Sister Study meaningful to you can be very motivating to other participants. Please go to Contact Us to request guidelines for sharing your story and to learn about the type of photograph we can best reproduce.

Lightening Your Load and Tailoring Your Experience

Photo of Advocates


 

 

 

 

 

 


 


(From left to right) Kalimah, Storme, Lourdes, Jannie, and Brenda are part of the Participant Advocates team.

Sister Study Advocates

We know that we ask much of you. Without your dedication and commitment to the Sister Study, we never could have established this groundbreaking cohort. We also know that staying in a study like this for many years can be challenging. We want you to know that we hear you! We hope you will notice that we are finding ways to lighten your load and are making changes in response to your feedback. For example, we are changing how often we ask you to do something for the study, and we are working to make our questionnaires shorter. If you have indicated how you prefer to complete questionnaires—online, on paper, or by telephone—we want to give you that option first. We have introduced a new team of Participant Advocates whose role will be to make it easier for some of you to participate. These advocates have been specially trained to work with Sisters who need help completing follow-up questionnaires. An advocate and a participant partner to work through any barriers to participating.

Our goal is to listen to you, and to do everything possible to make remaining in the study as easy as possible.

Follow-Up Questionnaires

Detailed Follow-up

Regular Sister Study follow-up efforts are ongoing. In an effort to reduce the burden on our study participants, we have changed the schedule of the long-form follow-up questionnaires from every two years (biennial) to every three years (triennial). We will ask you to complete a detailed online or paper follow-up questionnaire. You may also complete the questionnaire by telephone. The follow-up questionnaire updates your health status in more detail than the Annual Health Updates and allows us to ask questions that address new theories about breast cancer. The success of this research effort depends on everyone’s full participation. We are hopeful that with each piece of information you provide, we will be one step closer to discovering the causes of breast cancer and learning ways to prevent this disease. Please continue to help by completing and returning your completed questionnaires promptly.

annual health update

Regular Sister Study follow-up efforts are ongoing. Every year, we will send you an Annual Health Update: a quick online or paper questionnaire about changes in your address or health (for example, a diagnosis of breast cancer or a heart attack). We ask you to complete and return it promptly even if there have not been any changes to your health. You may also complete the questionnaire by telephone.

If you received a request from the Sister Study to complete the current year’s Follow-up Questionnaire and would like to complete it online, you will need your Sister Study ID and other information that was provided via e-mail or in the materials you received by mail. If you do not have the information you need to get started, please call the Sister Study helpdesk toll-free at 877-4SISTER (877-474-7837) or e-mail us at update@sisterstudy.org and a helpdesk staff person will be happy to help.

Recent Initiatives

SISTERS CHANGING LIVES SAMPLE COLLECTION

Some participants have been contacted about the Sisters Changing Lives Sample Collection -- a recent initiative that may allow researchers to learn how exposures and biological factors can change with time, age, and health. Samples of blood, urine, dust, and toenails, along with body measurements have been taken to compare changes between the recently collected samples and those participants gave when they joined the study. Read more about the study.

In the News

NEWS ARTICLES

The Sister Study continues to make news, both for what we are trying to do and because of recent findings. Links to some recent articles are below.

March 2015:
The work of the Two Sister Study was recently featured by Susan G. Komen for the Cure on their website. This study, directed by Dr. Clarice Weinberg and others from the Sister Study team involved participants in the Sister Study who had a sister diagnosed with breast cancer before age 50. Sister Study participants were asked to invite their sister with breast cancer to also complete Sister Study questionnaires about lifetime experiences and to provide a sample of saliva as a source of DNA. Their parents were also invited to provide a saliva sample. 1,669 eligible sisters with breast cancer were invited and completed the questionnaire. Among these women, 1,313 completed all or most of the study activities, including providing consent for follow-up, and are considered fully enrolled. 1,354 parents also participated by providing saliva samples. The study, funded in part by Susan G. Komen for the Cure has reported results on possible risk factors for breast cancer in younger women and is now analyzing data on gene-environment interactions.
 Read full article on the .Susan G. Komen for the Cure website exit disclaimer

February 2015: “Breast Cancer Prevention Drug Benefit Varies Among At-Risk Women, Study Finds” exit disclaimer by Dr. Hazel Nichols, article published by the UNC Lineberger website. 
Read scientific article.exit disclaimer

October 6, 2014: "Frankie Meyer: Learn Health History of Your Family" exit disclaimer by Frankie Meyer, published by The Joplin Globe.

June 2014: "Solvents May Raise Breast Cancer Risk For Some, Study Finds" exit disclaimer by Maggie Fox, published NBC News online.

October 2, 2012: "Getting closer: Working hard to find a cure for cancer" exit disclaimer by Dr. Miriam Stoppard, published Mirror online.

July 6, 2012: Fertility Drugs’ Link to Breast Cancer Hinges on Pregnancy, Study Saysexit disclaimer by Carrie Gann, ABC News Medical Unit via Good Morning America. exit disclaimer

PUBLICATIONS

We are often asked, “when will the Sister Study have results?” We already do! As a result of the analysis of the data we have collected and will continue to collect from you, researchers are able to answer important questions about breast cancer and other health conditions. Please go to the Articles page where published scientific articles appear as well as those that are in press.

NEWSLETTERS

In the Newsletters section you will find all current and past Sister Study yearly newsletters. These are written with you in mind, to keep you informed as well as others who are interested in the progress of the Sister Study.

Call for Spoke-Sisters

We are periodically contacted by media outlets to report on Sister Study progress. Reporters are not only interested in study results, but are also interested in who the participants are and why you continue to participate and remain so committed to this research. The Sister Study participants humanize our research and deepen media stories. If you are a participant in the Sister Study and would like to give us permission to contact you for media stories, please go to Contact Us for ways to contact the Sister Study. We will always approach you first before sharing your contact information with the reporter.


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