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Don't just save her life, save her fertility

CHICAGO --- Northwestern University's Feinberg School of Medicine has been awarded a $21 million grant from the National Institutes of Health for a landmark national research, clinical and education program that targets fertility threats posed to women by cancer treatment.

When a woman is diagnosed with cancer, her treatment has a laser-like focus to save her life. But the powerful chemotherapy and radiation that cures cancer or sends it into remission can destroy a woman's ability to conceive children. The goal of the new program is to significantly alter how the medical world cares for female cancer patients and promote a new consciousness to protect their reproductive health.

The program, called The Oncofertility Consortium, is headed by leading fertility researcher Teresa Woodruff, Thomas J. Watkins Professor of Obstetrics and Gynecology and chief of the Feinberg School's newly created fertility preservation division. She coined the term oncofertility to define the pioneering new discipline in which cancer treatment and fertility health intersect.

"We're trying to create a total shift in how we interact with female cancer patients to anticipate their lives as survivors and their ability to bear children," said Woodruff, who is the architect of the new consortium and former associate director for basic sciences at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

The Oncofertility Consortium is comprised of an interdisciplinary team of biomedical and social scientists, oncologists, pediatricians, engineers, educators, social workers and medical ethicists from Northwestern and the University of California-San Diego, University of Pennsylvania, University of Missouri-Columbia and Oregon Health & Science University. Its research will include a thorough examination of the scientific, medical, psychological, legal and ethical issues surrounding infertility and cancer.

Consortium members will work together on scientific, medical, psychological, legal and ethical issues surrounding the use of advanced reproductive technologies in cancer patients. Researchers will investigate how young women will be able to afford these new technologies. The consortium also will assess how extraordinary stress affects women's decisions and will develop new strategies to improve the quality of communications with newly diagnosed cancer patients.

The funding will support new research to preserve fertility for women and teenage girls. Eventually, it also will have a unique focus on young girls and even infants, the two populations for whom there currently are few options. As the survival rate for childhood cancer continues to improve, saving children's fertility is becoming an urgent mission.

Another component is a new position at the Feinberg School -- believed to be the first in the nation -- called a Fertility Preservation Patient Navigator. This patient navigator will help every newly diagnosed woman and teenage girl figure out the best options to preserve her reproductive health before starting cancer therapy and will coordinate that plan with the patient's doctors.

Because most cancer patients are not aware of fertility threats from their treatment or what can be done to help, a new website will be developed to educate patients and physicians with the most up-to-date information about fertility risks and treatment choices.

Northwestern's program is a template that will be adopted by other participating medical centers around the country.

The program is being funded by the National Institutes of Health (NIH) Roadmap for Medical Research, an effort to integrate aspects of different disciplines to address health challenges that have been resistant to traditional research approaches. A central goal of Roadmap programs is to help transform the way research is conducted, said Elias A. Zerhouni, M.D., director of the NIH.

Here are details about some of the key elements of The Oncofertility Consortium:

Ovarian Tissue Freezing - Follicle Maturation Research

Plans call for the national expansion of Woodruff's Ovarian Tissue Freezing Program, an ongoing effort to develop an entirely new way of growing and preserving a woman's immature eggs, or young follicles, so they can be fertilized and implanted into the uterus when she is ready to have children. "This research holds the promise of enabling all female cancer patients of childbearing years to eventually become pregnant and give birth to their own children," Woodruff said. Our goal is to offer more freedom and choice later in life and to improve the quality of life for cancer patients.

Cancer patients who are participants in the ovarian tissue program will have an ovary surgically removed before they begin treatment. Woodruff cryogenically preserves 20 percent of the ovarian tissue for her research and 80 percent for the woman to use in the future. Eventually, the goal is to thaw the tissue when the woman is ready to have children and mature the follicles in a special gel made from brown algae that supports its three-dimensional development. The mature eggs then would be fertilized and implanted into the woman. The laparoscopic removal of an ovary does not require a significant delay in cancer treatment beyond one to two days of recovery. Additionally, infants as young as 6 months could undergo this procedure since neither reaching puberty nor fertilization are required. If successful, this technique also could offer new conception options for women with fertility problems other than those caused by cancer treatment.

Thus far, Woodruff has successfully completed this process in mice and has produced two healthy, fertile generations of pups. Early work in using human follicles is ongoing, Woodruff noted.

With the new consortium, women can now have the tissue freezing procedure at 22 participating centers around the country. This network will provide patients with local alternatives for fertility preservation and promote physician collaboration to provide a full menu of options to patients undergoing cancer treatment. Northwestern's program will serve as a template for other participating medical centers around the country.

Currently, the options for women to save their fertility are limited. One is emergency in vitro fertilization, which requires a sperm donor in order to fertilize the egg to create an embryo. Another option is freezing a mature egg. Both procedures require time and hormone induction. Neither of these options is available to children, who do not yet have mature eggs.

The Fertility Preservation Patient Navigator

The thought of being sterile was almost as devastating as my cancer diagnosis itself, says Lindsay Nohr Beck, founder and executive director of Fertile Hope. In my eyes cancer wasn't permanent; it was a hurdle to clear. Infertility was permanent and something I wasn't sure I could deal with. Facing the risk of infertility from cancer treatments is daunting, but worse is not knowing your risks and options.

When a teenage girl or a woman is diagnosed with cancer, she is swept into the emotional vortex of medical appointments and treatments with a single-minded focus -- saving her life.

Enter Jill Trainer the Fertility Preservation Patient Navigator at the Feinberg School, believed to be the first such position in the nation. Trainer is a reassuring guide as newly diagnosed women or teenage girls begin therapy. Trainer will help the patient sort out the best option to preserve her reproductive health and then will work with the patient's doctors to coordinate the plan. A licensed clinical social worker, Trainer provides emotional support for patients and is the liaison between cancer patients, oncologists and reproductive endocrinologists.

Educating Doctors and Patients

Another goal of the grant is educating young female cancer patients, families and their physicians about cancer and infertility. Daniel Edelson, associate professor of education and social policy-learning sciences, and Kemi Jona, research associate professor of learning sciences and computer science, will lead a project to develop interactive programs and resources that provide patients and physicians with the most up-to-date information about fertility risks and treatment choices. "We want to provide young cancer patients and their families the information and support they need to understand the impact of cancer treatments on fertility and the options they now have for preserving their fertility, said Jona. The patient website will be accessible 24/7 to provide a wealth of information as well as help families connect with survivors for support as they go through this difficult time."

Their educational efforts will draw on social science projects that are also part of the grant, which will include studies looking at doctor-patient communication patterns, medical-decision making, and the psychosocial consequences of infertility:

  • The Patient-Parent-Partner Education and Support Network will be a web site for patients and their families to learn about fertility challenges in the face of a cancer diagnosis. The web site also will connect patients and their families with a network of cancer survivors to provide support and guidance during the difficult period immediately following a cancer diagnosis.
  • The Oncofertility Professional Education Network will provide oncofertility fellows and physicians with e-learning modules on fertility preservation and access to emerging results of the consortium's interdisciplinary research effort.
  • The Oncofertility Saturday Academy will be an ongoing class for middle-school girls that will expose them to scientific research, laboratory and health care experiences to encourage future generations of oncofertility scientists.

Consortium leaders from Northwestern include Woodruff, the Thomas J. Watkins Professor of Obstetrics and Gynecology and director of the Institute for Women's Health Research; Daniel Edelson, associate professor of education and social policy-learning sciences; Linda Emanuel, M.D., Buehler Professor of Geriatric Medicine and director of the Buehler Center on Aging, Health & Society; Ralph Kazer, M.D., professor of obstetrics and gynecology and chief of reproductive endocrinology and infertility at Northwestern Memorial Hospital; and Lonnie Shea, associate professor of chemical and biological engineering; Laurie Zoloth, professor of medical humanities & bioethics and religion, director of Center for Bioethics, Science and Society; David Dranove, Walter J. McNerney Distinguished Professor of Health Industry Management; Karrie Snyder, assistant research professor at the Institute for Women's Health; Paul Arnston, professor of communication studies; and Dorothy Roberts, Kirkland & Ellis Professor of Law.


Contact: Marla Paul
Northwestern University

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