Approved Ancillary Studies

The table below lists all CCSS Ancillary Studies. You can search the list by using one or both methods below:

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Title PI/Institution Funding Source Status Study Aims Citation
Premature Menopause in Survivors of Childhood Cancer Charles Sklar (Memorial Sloan Kettering Cancer Center) National Institutes of Health (R01 CA79024) Completed Examine the prevalence and risk factors for premature menopause and associated psychosexual functioning in a cohort of 5500 young adult female survivors of cancer diagnosed during childhood and adolescence. J Clin Endocrinol Metab. 2006 May;91(5):1723-8.

J Natl Cancer Inst 2006 Jul 5;98(13):890-6
Smoking Cessation among Childhood Cancer Survivors Karen Emmons (Harvard University) National Institutes of Health (R01 CA78960-01) Completed
Conduct a randomized intervention trial to test a peer-based smoking cessation program for long-term survivors of childhood cancer. J Clin Oncol. 2003 Jan 15;21(2):189-96.

J Clin Oncol 2005 Sep 20;23(27):6516-23

Prev Med. 2006 Jun;42(6):435-42.

J Clin Oncol. 2009 Jan 1;27(1):52-60.
Mammography and High-Risk Survivors of Pediatric Cancer Kevin Oeffinger (Memorial Sloan Kettering Cancer Center) National institute of Health (R21 CA106972) Completed Evaluate the prevalence of and factors predictive for mammography among long-term survivors of childhood cancer who are at high-risk for radiation-induced breast cancer. JAMA 2009 Jan 28;301(4):404-14
Metabolic Syndrome in Adult Survivors of Childhood acute Lymphoblastic Leukemia James Gurney (University of Minnesota) National Institutes of Health (R21 CA1068778) Completed
Evaluate clinically the metabolic syndrome and associations with growth hormone deficiency and endothelial impairment as late effects of treatment for childhood acute lymphoblastic leukemia. Cancer 2006 Sep 15;107(6):1303-12

Pediatr Blood Cancer. 2007; 49(7): 975-81.

Ann Epidemiol 2007; 17: 778-81.

J Pediatr Hemotol Oncol 2008; 30: 20-25

J Pediatr Hematol Oncol 2008; 30: 815-22

Cancer 2008; 113: 3248-56.
Health Outcomes for Hodgkin Disease Survivors Debra Friedman (Vanderbilt University) National Institutes of Health (R01 CA106750-05) Active
Examine the cumulative incidence and characterize the spectrum of selected adverse physiologic and psychosocial outcomes in contemporarily treated Hodgkin disease survivors.  
Quality of Life after Successful Treatment for Acute Myelogenous Leukemia H Stacy Nicholson (Oregon Health Sciences Center) National Institutes of Health (R01 CA78960-01) Completed Evaluate the occurrence of late effects among five-year survivors of childhood acute myeloid leukemia to compare the risks associated with intensive therapy, including bone marrow transplantation.  
Safety/Efficacy of Growth Hormone Therapy in Survivors of Childhood Cancer Charles Sklar (Memorial Sloan Kettering Cancer Center) Genentech Foundation Completed
Evaluate the use of growth hormone therapy in survivors of childhood cancer to determine potential impact on final height, risk of cancer-recurrence, and risk of second neoplasm. J Clin Endocrinol Metab. 2002 Jul;87(7):3136-41.

J Clin Endocrinol Metab. 2004 Sep;89(9):4422-7.

J Clin Endocrinol Metab. 2006 Sep;91(9):3494-8.
Radiation Dosimetry for Childhood Cancer Survivors Ann Mertens (University of Minnesota) Lance Armstrong Foundation Completed Estimate tissue-specific dose of radiation received by survivors of childhood cancer who experience selected adverse outcomes within the context of a nested case-control study. Lancet 2005; 365: 2014-23. 

Radiat Res. 2006; 166: 618-628

J Clin Oncol. 2009: 27: 3901-7.
Health Profiles in Adolescent Survivors of Childhood Cancer Ann Mertens (University of Minnesota) American Cancer Society Completed
Investigate the physical, cognitive and emotional development of adolescent survivors of childhood cancer to aid in development interventions to improve quality of life. Pediatr Blood Cancer. 2012 Mar; 58(3): 428-34

J Pediatr Psychol. 2012 Mar 16. {Epub ahead of print}
Psychosocial, Behavioral and Pain Outcomes in Survivors of Childhood Cancer Lonnie Zeltzer (UCLA) Lance Armstrong Foundation Completed Determine, within the CCSS cohort, the prevalence and risk factors for psychosocial outcomes in long-term survivors of childhood and adolescent cancer. J Clin Oncol. 2004; 22: 999-1006.

Pediatr Blood and Cancer 2007; 49: 47-51.
Preconception Radiation and Reproductive Outcomes among Survivors of Childhood Cancer John Boice (International Epidemiology Institute) Westlakes Research Institute Completed
Investigate the potential risk of transgenerational effects among the offspring of survivors of childhood cancer in the USA and Denmark who were treated with radiation. J Natl Cancer Inst. 2006 Oct 18;98(20):1453-61.
Feasibility Study for Project VISION: A Virtual Information Center for Survivors Kevin Oeffinger (Memorial Sloan Kettering Cancer Center) Lance Armstrong Foundation Completed
Assess the feasibility of a randomized clinical trial using a virtual information center as a cognitive-based intervention with survivors and health care providers.  
Patient Perceived Barriers to Long-Term Follow-up for Adult Survivors of Childhood Cancer Kevin Oeffinger (Memorial Sloan Kettering Cancer Center) Robert Wood Johnson Foundation Completed Determine the spectrum of, and characteristics predictive for barriers to cancer-related health care of adult survivors of childhood cancer. Ann Family Med 2004;2:61-70

Cancer 2009;115:642-54.
Function and Quality of Life of Survivors of Pediatric Lower Limb Tumors Rajaram Nagarajan (University of Minnesota) ASCO (Young Investigator Award) Completed
Investigate the function, quality of life, and psychosocial outcomes of adult survivors of pediatric lower extremity bone tumors to compare amputation and limb-sparing surgeries within age-specific groups. J Cancer Surviv 2009;3(1):59-65
Testicular and sexual dysfunction in adult survivors of childhood cancer Lillian Meacham (Emory University) Lance Armstrong Foundation Active
Investigate the psychosexual function of male long-term survivors of childhood cancer to determine the prevalence of and risk factors for physiological and psychological adverse outcomes.  
Adult Neurobehavioral Late Effects of Pediatric Low Grade Brain Tumors Douglas Ris (Baylor College of Medicine) National Institutes of Health (R01 - CA132899-01A1) Active
Ascertain the presence, degree and nature of neuropsychological dysfunction in adults treated as children for low grade brain tumors and to investigate accelerated cognitive aging.  
Health Beliefs and Behavior: Cohort Studies in Pediatric Cancer Survivorship Tara Henderson (University of Chicago) National Institutes of Health (K07 CA134935-02) Active
Characterize barriers and facilitators of breast cancer surveillance, diagnosis and therapy in women with secondary breast cancer, and explore associations between breast cancer surveillance practices, initial method of detection, health beliefs and breast cancer outcomes.  
Efficacy of a Tobacco Quit Line for Childhood Cancer Survivors Robert Klesges (St. Jude Children's Research Hospital) National Institutes of Health (R01 CA127964-02) Active To conduct a randomized intervention trial designed to test the efficacy of Pro-active versus Reactive approach for smoking cessation.  
Environmental Exposure: Susceptibility alleles in a DNA damage response pathway Peter Stambrook (University of Cincinnati) National Institutes of Health (1R01 ES016625-01A1) Active Define genetic changes a signaling pathway that contribute to susceptibility to breast cancer after environmental exposure.  
Prediction Model for Radiation Sensitivity in Children with Cancer Stella Davies (Cincinnati Children's Hospital Medical Center) National Cancer Institute (U01 CA139275-01) Active
To identify genetic polymorphisms related to BCC following radiation.  
Prognostic Genetic Biomarkers for Cancer Kenan Onel (University of Chicago) National Cancer Institute (R21 CA129045-02) Completed Detailed genomic and functional analysis of inborn susceptibilities in another SMN, IR-induced SMN in Hodgkin disease survivors.  
Are Adult Survivors of Childhood Cancer Underinsured? Elyse Park (Massachusetts General Hospital) Lance Armstrong Foundation Active
To compare survivor's and sibling's quality of coverage, perceptions of coverage, consequences of inadequate coverage and coverage-related concerns. To examine survivors' and siblings' knowledge regarding relevant legislations.  
Investigating the needs of childhood cancer survivors: The unreported experience (INSURE) Cheryl Cox (St. Jude Children's Research Hospital) National Cancer Institute (R21 CA14292-01) Active
Evaluate the psychometric and item-response performance of a needs assessment survey; evaluate sample selection participants and response rates to inform future longitudinal needs assessment surveys.  
Symptom Cluster Subgroups in Adult Survivors of Childhood Cancers Lorna Finnegan (University of Illinois at Chicago) National Institutes of Health (R01CA136912) Active
Identify subgroups using a five-symptom cluster including pain, fatigue, sleep disturbance, psychological stress, difficulty concentrating to determine relations with influencing factors (e.g., cancer type, treatment modality, etc.).  
Prediction model: Breast Cancer in Woman Irradiated for Pediatric Malignancy Chaya Moskowitz (Memorial Sloan Kettering Cancer Center) National Institutes of Health (R01 CA136783) Active
Determine association of dose of chest radiation, additional treatment factors, and traditional breast cancer risk factors associated with risk of breast cancer among childhood cancer survivors, then develop a breast cancer risk prediction tool.  
Radiation Dose and Risk of Non-Melanoma Skin Cancer in Cancer Survivors Ann Mertens (University of Minnesota) Lance Armstrong Foundation Completed Investigate radiation does and the subsequent risk of non-melanoma skin cancer in cancer survivors. Cancer. 2009;115(18 Suppl):4374-84.
Evaluation of Cardiovascular Outcomes Among Childhood Cancer Survivors (ECHOS) Melissa Hudson, Cheryl Cox (St. Jude Children's Research Hospital) National Institutes of Health (R01 CA136912-02) Active
Assess the efficacy of the intervention in increasing the rate of CV screening and to identify changes in survivor behavioral characteristics in response to the intervention, their mediating effects on the primary outcome, and the cost-effectiveness of the intervention.  
Genetic Susceptibility to Obesity after Treatment for Childhood Leukemia Kayla Kamdar (Baylor) Leukemia & Lymphoma Society Translational Research Program Active Using genome-wide and candidate pathway analyses, this study aims to identify genetic variants and ultimately key biological pathways that are involved in the development of obesity
 
Mechanisms of RET/PTC Rearrangements in Thyroid Cancer Yuri Nikiforov (University of Pittsburgh) National Institutes of Health Active To test whether alterations in one or more DNA repair genes lead to an increased rate of RET/PTC rearrangement in vitro and to thyroid cancer in patients exposed to radiation.  
EMPOWER Study: Encourage Mammography and Prevention Opportunities for Women Exposed to Radiation Kevin Oeffinger (Memorial Sloan Kettering Cancer Center) National Institutes of Health (R01 CA134722) Active Determine efficacy of stepwise two-component intervention on mammography rates and explore moderating and mediating factors.  
Laten Trajectories of Late Treatment Effects in Pediatric Brain Tumor Survivors Thomas Hardee (Drexel University)  Oncology Nurse Society Foundation  Active Identify longitudinal patterns of psychosocial outcomes in adult survivors of childhood brain tumors.   
Secondary prevention among childhood cancer survivors: a quantitative approach to facilitate the effective use of screening David Hodgson (University of Toronto)

POGO: Pediatric Cancer Outcomes Initiative (PCOI)

Active To quantify the benefit of selected health maneuvers among childhood cancer survivors (early onset breast and colorectal cancer screening, echocardiography) using Markov transition-state models.  

Effective estimation of second cancer risks and resultant possible improvements in treatment protocols

Siv Sivaloganathan (University of Waterloo)

Canadian Institutes of Health Research – NSERC CHRP

Active

To develop predictive models of second cancer risk among adolescent Hodgkin lymphoma patients based on 3-dimensional normal tissue radiation dosimetry.

 

Neurofibromin and response to genotoxins

Jean Nakamura (University of California, San Francisco)

St. Baldrick’s Foundation

Active

(1) Determine whether loss of heterozygosity in tumor suppressor genes identified in the Nf1 mutant mouse model occurs in second malignant neoplasms of childhood cancer survivors, and (2) determine whether transcript levels of candidate tumor suppressor genes are reduced in second malignant neoplasms.

 

Diet and insulin resistance in survivors of childhood leukemia

Emily Tonorezos (Memorial Sloan Kettering Cancer Center)

American Cancer Society (Career Development Award)

Active

1) Determine the effectiveness of a remotely delivered diet and physical activity intervention among obese ALL survivors, 2) Calculate the effect of the diet and physical activity intervention on insulin, leptin/adiponectin, and lipids.

 

Diet and insulin resistance in survivors of childhood leukemia

Emily Tonorezos (Memorial Sloan Kettering Cancer Center)

American Institute for Cancer Research

Active

1) Determine the effectiveness of a remotely delivered diet and physical activity intervention among obese ALL survivors, 2) Calculate the effect of the diet and physical activity intervention on insulin, leptin/adiponectin, and lipids.

 

Bone Deficits and Excess Adiposity after Pediatric Bone Marrow Transplantation

Sogol Mostoufi-Moab (University of Pennsylvania)

National Institutes of Health (K07 CA166177)

Active

Among survivors of HSCT to characterize changes in bone density and structure, body composition and fat distribution, and associated risk factors and outcomes.

 

Risk Reduction and Early Detection Strategies for Skin Cancer Control among Childhood Cancer Survivors

Alan Geller (Harvard School of Public Health

National Institutes of Health (R01 CA175231)

Active

(1) Determine the impact of a patient activation and education intervention with and without physician education and teledermatology on skin cancer early detection practices and (2) Determine the impact of patient activation and education on utilization.

 

Longitudinal Evaluation of Health Status in Survivors of Pediatric Astrocytoma

Karen Effinger (Stanford University)

ASCO Conquer Cancer Foundation Young Investigator Award (YIA)

Active

To evaluate 1) Health status, 2) Chronic Health Conditions and  3) Treatment-related risk factors among survivors of astrocytoma.

 

Diet and insulin resistance in survivors of childhood leukemia

Emily Tonorezos (Memorial Sloan Kettering Cancer Center)

National Institutes of Health (R01)

Active

1) Determine the effectiveness of a remotely delivered diet and physical activity intervention among obese ALL survivors, 2) Calculate the effect of the diet and physical activity intervention on insulin, leptin/adiponectin, and lipids.

 

Shortened telomere length and defects in telomere maintenance associated with thyroid second malignant neoplasm in childhood cancer survivors

Maria Gramatges (Baylor College of Medicine)

National Institutes of Health (R01)

 

Active

1) Determine whether SNPs associated with telomere maintenance are enriched in survivors with thyroid SMN (GWAS), 2) To look at impact of defects in telomere maintenance genes upon telomerase function

 

Developmental HyperActive Ras Tumor SPORE, (Subsequent Malignant Neoplasms among individuals with NF1)

 

Smita Bhatia (City of Hope)

National Institutes of Health (SPORE)

Active

1) to implement effective targeted molecular therapies for neoplasms and cancers characterized by NF1 mutations by conducting integrated, mechanistically based translational research. 2) to describe risk of SMNs and demographic/therapeutic factors associated with SMNs in individuals with NF1 and primary cancer

 

Symptom Progress and Adverse Health Outcomes in Adult Survivors of Childhood Cancer

I-Chan Huang (St. Jude Children’s Research Hospital)

National Institutes of Health (R21)

Active

(1)  To investigate individual symptom  categories and clusters across multiple time points

(2)  To investigate the prognostic value of symptoms for developing chronic conditions

 

New Methods to Address Dilemmas in Mixed Recurrent-event and Panel-count data

Liang Zhu  (St. Jude Children’s Research Hospital)

National Institutes of Health (R21)

Active

Develop Semi-parametric methods for regression analysis of mixed recurrent event data with terminal events

 

Cost effectiveness of breast cancer screening guidelines for female survivors of pediatric cancers

Lennie Wong (City of Hope)

 

American Cancer Society

Active

1) Examine the cost-effectiveness of annual clinical breast examination, 2) Examine the cost effectiveness of annual mammography only strategy vs. MRI only.

 

Advancing Survivors Knowledge About Skin Cancer (ASK)

 

Alan Geller (Harvard School of Public Health)

 

National Institutes of Health (R01 CA175231)

 

Active

(1) Determine the impact of a patient activation and education intervention with and without physician education and teledermatology on skin cancer early detection practices and (2) Determine the impact of patient activation and education on utilization.

 

Improving Cancer Screening Guidelines for Survivors of Childhood Cancer

 

Jennifer Yeh (Harvard School of Medicine)

American Cancer Society

Active

1) Develop a microsimulation model of the natural history of late-effects among childhood cancer survivors; 2) Use the model to project the disease burden, in terms of morbidity and mortality, associated with late-effects among treatment-exposure subgroups; and 3) Assess the comparative effectiveness (and cost-effectiveness) of recommended screening strategies for secondary breast and colorectal cancers to improve long-term outcomes among at-risk survivors.

 

Risk Prediction Model of Premature Menopause in Childhood Cancer Survivors

Yan Yuan (University of Alberta)

 

Canadian Institutes of Health Research

 

Active

To develop a prediction model for early menopause.

 

Communicating Health Issues and Improving Coordination with Primary Care (CHIIP)

 

Eric Chow (University of Washington)

 

National Institutes of Health (R01)

 

Active

1) Determine prevalence of under diagnoses and under treatment of traditional cardiovascular risk factors, 2) Randomized controlled intervention to improve risk factors, 3) Determine barriers that lead to under diagnosis and under treatment.

 

Late Effects Prediction using Clinical Phenotypes and Whole Genome Sequencing

 

Yutaka Yasui, Jinghui Zhang (St. Jude Children’s Research Hospital)

National Institutes of Health (RO1)

 

Active

1) Build individual risk prediction models with the SJLIFE cohort for 11 outcomes including meningioma, basal cell carcinoma, and multiple subsequent neoplasms, 2) Validate the risk prediction models a larger cohort study with higher SN counts (CCSS).

 

Statistical Analysis for Mixed Outcome Measures in Recurrent Event Studies

 

Liang Zhu (University of Texas MD Anderson)

 

National Cancer Institute (R03)

 

Active

Develop a likelihood-based semiparametric estimation method for regression analysis of mixed panel-binary and panel-count data.

 

EMPOWER II: Promoting Breast Cancer Screening in Women Who Survived Childhood Cancer

 

Kevin Oeffinger (Duke University)

 

National Institutes of Health (R01)

 

Active

To determine the efficacy of smart phone, text-based patient and physician activation to improve breast MRI and mammography screening rates.

 

Risk Factors for Female Breast Cancer After Treatment for Childhood and Adolescent Cancer: An Individual Patient Data Analysis

 

Cecile Ronckers (Princess Maxima Center for Pediatric Oncology, Utrecht)

 

Kika Foundation

Active

1) Establish an internationally pooled and harmonized database for breast cancer outcomes, 2) Answer three questions identified by the International Harmonization Guidelines for risk for subsequent breast cancer including risk <20Gy, associated with anthracycline exposure and attained age >50 years.

 

Breast Cancer after Treatment for Childhood Cancer

 

Lucie Turcotte, University of Minnesota

 

National Institutes of Health (K08)

 

Active

1) Quantify OS and EFS among CCSS participants with breast cancer and compare with SEER cohort of women with primary breast cancer, 2) Compare prescribed treatment and breast cancer treatment-related toxicity between CCSS participants with breast cancer and a comparison cohort of women with primary breast cancer, 3) Perform semi-structured interviews with medical and radiation oncologists to understand drivers of treatment decision-making, and use responses to create a survey for distribution to medical and radiation oncologists.

 

Genetic Testing to Guide Pediatric Cancer Care and Follow-up: Using Anthracycline-Associated Cardiomyopathy as a Model for the Future

Jennifer Yeh (Harvard School of Medicine)

 

National Institutes of Health (Provocative Questions R01)

 

Active

1) Determine the clinical utility of ca simulation model of cardiotoxicity genetic risk factors in guiding cancer care, 2) Assess how consideration of genetic markers can improve follow-up cardiomyopathy screening recommendations for at-risk survivors.

 

Developing a Health Insurance Navigation Program for Childhood Cancer Survivors

 

Elyse Park (Harvard School of Medicine)

 

American Cancer Society

Active

1) To develop a psychoeducational health insurance navigation program (HINP), 2) To conduct a pilot randomized trial of the HINP, 3) To refine the HINP program for future use.

 

Developing a Patient Reported Outcomes Version of the CTCAE for Survivors of Childhood Cancer (PRO-CTCAE-SCC)

 

I-Chan Huang, Justin Baker (St. Jude Children’s Research Hospital)

 

National Institutes of Health (R01)

 

Proposed

To conduct item creation, selection and validation of a PRO-CTCAE-SCC based on the current patient-reported outcomes version of the Common Terminology Criteria for Adverse Events.

 

 

Impact of eHealth intervention for insomnia on late effects of childhood cancer

 

Tara Brinkman(St. Jude Children’s Research Hospital)/Kevin Krull (St. Jude Children’s Research Hospital)

National Institutes of Health (R01)

Proposed

To assess the impact of insomnia treatment on neurocognitive impairment, symptoms of emotional distress, and indices of cardiovascular health in survivors of childhood cancer.

 

Biological Mechanisms of Accelerated Aging Evidenced as Frailty in Survivors of Childhood Leukemia

 

Monica Gramatges, Philip Lupo, Kiri Ness (Baylor College of Medicine and St. Jude Children’s Research Hospital)

 

National Institutes of Health (Provocative Questions R01)

 

Proposed

To assess the associations between physiologic frailty and telomere length (Aim 1), systemic inflammation (Aim 2), DNA methylation (Aim 3).

 

 

Improving Delivery of Genetic Services to High Risk Childhood Cancer Survivors: A Randomized Study of Remote Genetic Services Versus Usual Care

 

Tara Henderson (Univ. of Chicago)/Angela Bradbury(Univ. of Pennsylvania)

 

National Institutes of Health (R01)

 

Proposed

1) To Evaluate the efficacy of remote telegenetic services (telephone or videoconferencing) compared to usual care to increased uptake of genetic counseling, genetic testing and identification of germline genetic mutation carriers, 2) To evaluate the efficacy of real time video conferencing to provide greater knowledge and recall of results, decrease distress and improved satisfaction with genetic services compared to telephone delivery.

 

 

The Immunobiology of Long-Term Survival in Twins Discordant for Childhood Cancer

 

Wendy Cozen (University of Southern California)

 

:  National Institutes of Health (R01)

 

Proposed

1) Define immunologic alterations associated with pediatric leukemia / lymphoma survivorship (encompassing the cancer and its treatment by quantifying 16 systemic biomarkers of immune activation and inflammation in pediatric cancer survivors and their unaffected identical co-twins as controls. 2) Determine whether pediatric survivors have accelerated epigenetic aging compared to their unaffected twins, 3) Determine whether the gut microbiome is adversely altered in survivors.

 

Prevalence and Risk of Frailty in Survivors of Childhood Cancer

 

Todd Gibson/Kiri Ness (St. Jude Children’s Research Hospital)

 

National Institutes of Health (R01)

 

Proposed

1) To determine the prevalence of frailty and pre-frailty, 2) To identify associations between treatment exposures and frailty, and 3) To evaluate associations with quality of life.

 

 

Developing a Clinical and Genetic Risk Prediction Model for Diabetes Mellitus among Survivors of Childhood Cancer

Philip Lupo (Baylor College of Medicine)

 

National Institutes of Health (R01)

 

Proposed

1) To determine the prevalence of frailty and pre-frailty, 2) To identify associations between treatment exposures and frailty, and 3) To evaluate associations with quality of life.