Our cancer experts believe it’s not enough to treat the disease itself. We also need to dedicate research efforts so that we can better understand post-survivorship health issues and minimize long-term complications or late effects that cancer survivors may experience, such as secondary cancers or infertility.
Here are some of our ongoing research efforts.
Childhood Leukemia and Cancer Survivors Research:
- Kathy Ruble, Ph.D, R.N., director of the Hopkins Kimmel Cancer Center’s Long-Term Survivors Program, has a vested interest in survivors of childhood cancers. One area of focus in her research is maintaining good health. During cancer treatment, she says, pediatric patients are often forced to be inactive, and when they survive cancer and return to regular physical activities like sports teams, they may not initially be as confident or as skilled as their peers.
Dr. Ruble is planning a weeklong summer intervention program to build on self-confidence and physical skills for young cancer survivors. As part of the program, social workers will interview participants and their parents about their activities and the importance of exercise. For more information, contact Dr. Ruble at firstname.lastname@example.org.
Another study of hers is looking at blood vessel health in childhood leukemia survivors. They study will compare survivors of childhood acute lymphoblastic leukemia (ALL) to healthy siblings in terms of functioning of cells lining the blood vessels, blood vessel stiffness, height, weight, waist circumference, and fasting blood tests of fats, blood sugar and insulin. For more information, see the clinical trials section below. (link to below information)
- Alexandra Gubin, MSW, LGSW, clinical social worker and young adult patient navigator at the Johns Hopkins Kimmel Cancer Center, is engaged in a multidisciplinary quality improvement project, under the direction of pediatric oncology fellows, that addresses fertility preservation practices. They are in the process of standardizing a protocol/policy to ensure that all newly diagnosed patients at risk of infertility are properly screened, assessed and provided adequate resources if they choose to cryopreserve eggs or sperm.
Breast, Prostate and Colon Cancer Survivors Research:
- Claire Snyder, Ph.D., an outcomes and health services researcher, conducts research focusing on coordination of care between cancer specialists and primary care providers in meeting cancer survivors’ health care needs. After completing active cancer treatment, cancer survivors require surveillance for recurrence and treatment of long-term and late effects of cancer, as well as general primary and preventive care and, in many cases, care for comorbid conditions. However, the roles and responsibilities of oncology specialists and primary care providers in meeting these long-term needs are unclear. Dr. Snyder has conducted a number of investigations examining preventive and comorbid condition care in survivors of breast, prostate, and colorectal cancers. One of the key findings of this research is that survivors who have visits to both an oncology specialist and a primary care provider are most likely to receive appropriate care. She also has found evidence that having a primary care provider involved is critical in ensuring quality care for comorbid conditions such as diabetes. Because, over time, survivors are more likely to visit a primary care provider only, it is critical for oncology specialists and primary care providers to define their respective roles and responsibilities in providing follow-up care and recognize that these roles and responsibilities may change over time. It is also important to ensure that primary care providers have educational resources available to support their survivorship care.
Dr. Snyder’s cancer survivorship research has informed the survivorship care strategies at Johns Hopkins. For example, she works with oncologists, internists, nurses, ethicists, social workers, and cancer survivor advocates to develop breast cancer survivorship care strategies to meet the needs of our patients and providers. These strategies are now being adapted for use not only in breast cancer, but also throughout the cancer center. Dr. Snyder also co-chairs the Cancer Outcomes and Health Services Research Interest Group, which connects researchers across the schools of medicine, public health, and nursing with interests in survivorship and other cancer outcomes and health services research topics.
Her survivorship work has been supported by the National Cancer Institute, the American Cancer Society, the Maryland affiliate of Susan G. Komen for the Cure, the Ho Ching Yang Memorial Faculty Fellowship, and an unrestricted grant from Pfizer.
Breast Cancer Survivors Research
- Elissa Bantug, M.H.S., program coordinator for the Breast Cancer Survivorship Program, and others with the Johns Hopkins Breast Center have a grant from Susan G. Komen for the Cure to fund survivorship efforts in breast cancer. They also maintain a survivorship database looking at side effects and quality of life after breast cancer. In addition, the group has several grants being reviewed to examine quality of life issues for cancer survivors.
Head and Neck Cancer Survivors Research
Faculty with the Johns Hopkins Head and Neck Cancer Center are collecting data regarding quality of life and swallowing in patients with head and neck cancer patients and survivors. They are looking at the following areas:
1. The impact of gabapentin (Neurontin) on swallowing outcomes when given during radiation therapy.
2. Swallowing and voice outcomes in patients undergoing robotic-assisted surgical procedures for oropharynx and thyroid cancer.
3. The relationship between radiation dose to specific muscles of swallowing and long-term swallowing abilities and quality of life.
4. Voice outcomes after surgery for recurrent thyroid cancer.
5. Voice outcomes in singers undergoing thyroid surgery.
For more information, contact Heather Starmer, MA, CCC-SLP, at email@example.com.
Other research findings:
- Exercise can help manage symptoms like cancer-related fatigue and improve physical functioning during radiation therapy for breast cancer, according to studies directed by Victoria (Vicki) Mock, RN, PhD, (1942-2007) former director of nursing research at Johns Hopkins Kimmel Cancer Center. A 1997 study published in the journal Oncology Nursing Forum, for example, showed that women who engaged in a walking exercise program at home fared better than those who did not exercise regularly in physical functioning, and experienced less fatigue, anxiety and difficulty sleeping.
- Mock advised that women try to exercise every day – even if only for five to 10 minutes – though they should first get clearance from their doctor. Those who have finished treatment and have no underlying health issues or major side effects from treatment usually can follow an exercise program of their choice.
Clinical Trials Now Open:
Endothelial Function, Arterial Stiffness and Components of Metabolic Syndrome in Acute Lymphoblastic Leukemia Survivors
Kathy Ruble, RN, CPNP, PHD Johns Hopkins SKCCC
Office Phone: 410-614-5062
Hae Ra Han, RN, PhD Associate Professor,Johns Hopkins University, SON
Office Phone: 410-614-2669
The primary objective of this study is to compare endothelial function, as measured by the reactive hyperemia index (RHI) with the peripheral artery tonometry (PAT) device, of childhood ALL survivors to healthy sibling controls.
1. Ages 8-28 (8 is chosen as lower age limit because developmental understanding will allow survivor to follow instructions for procedures, 28 is chosen as upper limit to include age ranges seen for treatment in the pediatric program)
2. Off therapy for at least 6 months and not more than 10 years (6 months will allow adequate time for recovery from acute toxicity
1. Uncontrolled medical conditions that could interfere with participation or interpretation of results
2. History of relapsed ALL or history of bone marrow transplantation
1. Biological sibling
2. Ages 8-28 (when more than one sibling is available the one closest in age will be chosen.)
1. Uncontrolled medic al conditions that could interfere with participation or interpretation of results.
To search our database of ongoing clinical trials, click here.