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Project Information

Project Information


Childhood Cancers and Disability


Project Scope:

The task order objectives for an ad hoc committee of the National Academies of Sciences, Engineering, and Medicine are to:

1. Provide an overview of the current status of the diagnosis, treatment, and prognosis of select childhood cancers, including different types of malignant solid tumors, in the U.S. population under age 18 and the relative levels of functional limitation typically associated with the cancers, common treatments, and other considerations. 

2. For the cancers identified in task 1, describe to the degree possible:
a. The average age of onset and gender distributions;
b. The professionally accepted diagnostic techniques used in identifying childhood cancers (for example, laboratory and clinical findings) and how the techniques differ from those for adults (if appropriate);  
c. The stages of childhood cancers, how the stages are determined (for example, by specific laboratory findings), what the stages mean in terms of treatment and prognosis, and how they differ from cancers in adulthood (if appropriate);   
d. Clinical standards for identifying "cure" or complete remission, variability in the time period used to identify remission, the difference between complete remission and partial remission (if appropriate), and the consequences of partial remission (for example, if partial remission results in a reduction in type or intensity of treatment);   
e. The minimum period appropriate to consider a childhood cancer disabling under SSA’s definition of disability for children;
f. Secondary impairments that result from either the cancer or the treatment (for example, cognitive impairment following certain treatment);
g. Common long-term and late effects of the cancer or therapy;
h. Any variability in the period of time a child’s functioning can be expected to be significantly affected, remission rate, cure, or severity based on age of onset; and
i. Prognosis and survival rate based on the stage and the type of cancer (including area of body affected). 

3. For the cancers identified in task 1, identify the types of treatments available and describe to the degree possible:
a. The clinical practice guidelines for receiving the treatments; 
b. The settings in which the treatments are provided;
c. What receipt of the treatments indicates about the severity of the medical condition; 
d. The likelihood of improvement when receiving the treatments and the period over which the improvement would be expected; and
e. Any limitations on the availability of the treatments (other than due to financial circumstances), such as whether treatments are considered experimental, remain in the trial phase, or are only utilized in certain geographic areas.

4. For the cancers identified in task 1, provide a summary of select treatments currently being studied in clinical trials.

The report will include conclusions but not recommendations.

The committee shall not describe issues with respect to access to treatments due to financial circumstances, including insurance limitations.  While SSA recognizes some patients may have difficulty accessing care or particular forms of treatment due to financial circumstances, others do successfully access those treatments.  SSA may receive information about those treatments in the medical records SSA considers when making disability determinations and conducting continuing disability reviews (CDRs).  SSA understands improvement is not certain in all cases.  SSA makes individual decisions on each case based on all the evidence they receive.


Status: Current

PIN: HMD-HCS-19-06

Project Duration (months): 18 month(s)

RSO: Spicer, Carol

Board(s)/Committee(s):

Board on Health Care Services

Topic(s):

Health and Medicine



Geographic Focus:

Committee Membership

Committee Post Date: 10/09/2019

Paul A. Volberding - (Chair)
Paul A. Volberding, M.D., is a professor emeritus at the University of California, San Francisco (UCSF) School of Medicine; former co-director and principal investigator of the UCSF-Gladstone Center for AIDS Research; and director of the UCSF AIDS Research Institute. Trained in medical oncology, Dr. Volberding became involved in the early AIDS epidemic in San Francisco. He has worked in clinical trials in HIV-related malignancies but primarily in the development of antiretroviral therapy. Dr. Volberding is a member of the National Academy of Medicine. He currently serves on the National Academies of Sciences, Engineering, and Medicine’s Standing Committee of Medical and Vocational Experts for the Social Security Administration's Disability Programs and has chaired numerous National Academies’ committees, including, most recently, the Committee on Functional Assessment for Adults with Disabilities.
Jason R. Fangusaro
Jason R. Fangusaro, M.D., is director of Developmental Therapeutics and medical director of the Clinical Research Office at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. Dr. Fangusaro is also an associate professor of pediatrics at the Emory University School of Medicine and the Carter S. Martin Endowed Chair. As a clinical member of the pediatric neuro-oncology team, he specializes in treating children with central nervous system malignancies, including brain and spinal cord tumors. Dr. Fangusaro is a member of the Children’s Oncology Group (COG) Brain Tumor Steering Committee, serves as the vice chair of the Pediatric Brain Tumor Consortium (PBTC). He is a member of the International CNS Germ Cell Tumor Consensus Panel as well as the International Low-Grade Glioma Consensus Panel. He is the principal investigator on numerous multi-institutional large studies through the PBTC and COG.
Julia Glade Bender
Julia Glade Bender, M.D., is Vice Chair for Clinical Research at Memorial Sloan Kettering Cancer Center. She is a pediatric oncologist, specializing in the treatment of solid tumors of the bone and soft tissues, including osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, germ cell tumors, and other rare tumors. Dr. Glade Bender is a leader in developing clinical trials and treatments for children with cancer that does not respond to standard treatment. She is an ad-hoc member (consultant) to the Food and Drug Administration’s Pediatric Oncologic Drugs Advisory Committee.
Andrea Hayes-Jordan
Andrea Hayes-Jordan, M.D., is chief of the Division of Pediatric Surgery at the University of North Carolina School of Medicine and surgeon in chief at the North Carolina Children’s Hospital. She has a clinical background in pediatric surgery and pioneered cytoreductive surgery and Hyperthermic Intraperitoneal Chemotherapy in pediatric patients. Dr. Hayes-Jordan’s research focuses on the study of rare sarcomas in addition to conducting clinical trials establishing the proper dosage of chemotherapy for children receiving Hyperthermic Intraperitoneal Chemotherapy. She served as chair of the Cancer Committee of the American Pediatric Surgery Association and participated in the Executive Committee of the Children’s Oncology Group sarcoma committee.
Brandon Hayes-Lattin
Brandon Hayes-Lattin, M.D., is a professor of medicine and medical director in the Division of Hematology and Medical Oncology at Oregon Health and Science University (OHSU) and medical director of OHSU Knight Cancer Institute’s Adolescent and Young Adult (AYA) Oncology Program. His clinical background is in the management of hematologic malignancies and the use of hematopoietic stem cell transplantation. Dr. Hayes-Lattin has served as the senior medical advisor to the LIVESTRONG Foundation, the chief medical officer for Critical Mass: The Young Adult Cancer Alliance, and the inaugural chair of the AYA Committee for SWOG. He also participated on the expert advisory panel to the Children’s Oncology Group AYA Committee and was a member of the Centers for Disease Control Federal Advisory Committee on Breast Cancer in Young Women.
Tara Henderson
Tara Henderson, M.D., M.P.H., is director of the Childhood Cancer Survivors Center and an associate professor in the Department of Pediatrics at the University of Chicago Medicine. She is a pediatric oncologist with a particular interest in the care of childhood cancer survivors. Dr. Henderson’s research focuses on the outcomes of childhood cancer survivors and the development of and screening for second cancers in these patients. She has participated in the Childhood Cancer Survivor Study and the Late Effects/Outcomes and Hodgkin Lymphoma Committee for the Children’s Oncology Group (COG). Dr. Henderson has received research funding from Seattle Genetics to help support a research assistant for a study embedded in a COG trial, which is now closed.
Pamela S. Hinds
Pamela S. Hinds, R.N., Ph.D., is the executive director of the Department of Nursing Research and Quality Outcomes and the William and Joanne Conway Endowed Chair in Nursing Research at Children’s National Health System. She is a professor of pediatrics at George Washington University, School of Medicine and Health Sciences as well as adjunct professor for University of Pennsylvania, School of Nursing; John Hopkins University, School of Nursing; and University of Maryland, College of Nursing. Dr. Hind’s research focuses on the pediatric cancer experience, quality of life, fatigue and altered sleep during the treatment of pediatric cancers, and end-of-life communication and decision making. She was the inaugural chair of the nurse scholars and the inaugural co-director for the Patient-Reported Outcomes Resource Center for the Children’s Oncology Group. She previously served on several National Academies’ activities, including the Committee on Palliative and End-of-Life Care for Children and Their Families and the Planning Committee for Comprehensive Cancer Care for Children and Their Families: A Workshop.
Barbara L. Jones
Barbara L. Jones, Ph.D., is University Distinguished Teaching Professor and the Josleen and Frances Lockhart Memorial Professor of Direct Social Work Practice at the University of Texas at Austin Steve Hicks School of Social Work. She is also Associate Dean for Health Affairs at the school and co-director of the Institute for Collaborative Health Research and Practice. At Dell Medical School, she has appointments as chair of the Social Work Department; associate director of Social Sciences and Community Based Research at the LIVESTRONG Cancer Institutes; and professor of oncology, population health, and psychiatry. Dr. Jones’s research focuses on improving care for children, adolescents, and young adults with cancer and their families. Her current research focuses on palliative care, pediatric oncology social work interventions, and adolescent and young adult (AYA) cancer survivors.
Jennifer I. Koop
Jennifer I. Koop, Ph.D., is an associate professor of neurology at the Medical College of Wisconsin. She is a pediatric neuropsychologist specializing in the evaluation and treatment of children with neurological, behavioral and developmental disorders, with a particular focus on preschool and early childhood years. Dr. Koop’s current research investigates the effects of early neurological injury on the development of neuropsychological functions, especially attention. She previously served on the National Academies’ Committee on Psychological Testing, Including Symptom Validity Testing, for Social Security Administration Disability Determinations.
Valerae O. Lewis
Valerae O. Lewis, M.D., is a professor and chair of the Department of Orthopaedic Oncology at the University of Texas MD Anderson Cancer Center in Houston. She is also the associate director of the Department of Thoracic/Orthopaedic Center and associate director of the Sarcoma Center. Dr. Lewis is a leader in the field of orthopaedic oncology with particular expertise in limb salvage and pelvic sarcoma surgery in adult and pediatric patients. In 2011, she started the Multidisciplinary Pelvic Sarcoma Program at MD Anderson Cancer Center that not only addresses the clinical needs of this unique group of patients, but also works to improve both the clinical and functional outcome of patients with pelvic sarcoma.
Scott L. Pomeroy
Scott L. Pomeroy, M.D., Ph.D., is neurologist-in-chief and chair of the Department of Neurology at Boston Children’s Hospital and Bronson Crothers Professor in Neurology at Harvard Medical School. Dr. Pomeroy’s research uses molecular biology to understand neurodevelopmental origins and molecular mechanisms of childhood brain tumors contributing to the molecular classification of medulloblastomas that has been adopted by the World Health Organization. He has developed a genetic method of determining which patients with medulloblastoma are most likely to benefit from therapy. Dr. Pomeroy is a member of the National Academy of Medicine.
David Pruitt
David Pruitt, M.D., is medical director of the Inpatient Pediatric Rehabilitation Unit at Cincinnati Children’s Hospital Medical Center. He serves as director of the Pediatric Rehabilitation Medicine Fellowship for Cincinnati Children’s Hospital Medical Center and is an associate professor in the University of Cincinnati, Department of Pediatrics and Department of Neurology and Rehabilitation Medicine. Dr. Pruitt’s clinical interests include inpatient pediatric rehabilitation, pediatric cancer rehabilitation, and pediatric neuro-oncology. His research focuses on the functional outcomes of children with brain tumors.
Leslie L. Robison
Leslie L. Robison, Ph.D., is chair of the Department of Epidemiology and Cancer Control; associate director of Population Sciences; and co-leader of the Cancer Control and Survivorship Program within the Comprehensive Cancer Center at St. Jude Children’s Research Hospital. As a pediatric epidemiologist, Dr. Robison has had a career-long focus of etiologic and clinical research within pediatric populations, particularly childhood malignancies. He has conducted large national epidemiologic studies of childhood cancer and for 20 years was the founding principal investigator (PI) of the Childhood Cancer Survivor Study (a multi-institutional consortium evaluating a cohort of more than 40,000 five-year survivors of childhood cancer). Currently he is the multiple PI (with Dr. Melissa Hudson) of the St. Jude Lifetime Cohort Study (a clinical cohort of more than 8,000 survivors of childhood cancer treated at St. Jude).
Nancy J. Tarbell
Nancy J. Tarbell, M.D., served as Dean for Academic and Clinical Affairs at Harvard Medical School (HMS) and currently is the C.C. Wang Professor of Radiation Oncology Mass General Hospital (MGH) and HMS. Previously, she led pediatric radiation oncology at MGH and Children’s Hospital Boston. Dr. Tarbell is an internationally recognized expert in pediatric oncology and, in particular, pediatric brain tumors, and she serves on the national Children’s Oncology Group Brain Tumor Committee. She is a member of the National Academy of Medicine.
Emily S. Tonorezos
Emily S. Tonorezos, M.D., M.P.H., is director of the Adult Long-Term Follow-Up Program and an associate member and associate attending physician in the Department of Medicine and at Memorial Sloan Kettering Cancer Center. She is also an associate professor in the Department of Medicine at Weill Cornell Medical College. The Adult Long-Term Follow-Up Program cares for adult survivors of childhood cancer. As a general internist, Dr. Tonorezos’s research focuses on cardiometabolic consequences of cancer therapy and care coordination for this population.
Brigitte Widemann
Brigitte Widemann, M.D., is a senior investigator and head of the Pharmacology and Experimental Therapeutics Section at National Cancer Institute (NCI). She serves as Chief of NCI’s Pediatric Oncology Branch and Clinical Deputy Director of the Center for Cancer Research. Her research focuses on the development of early clinical trials for children and young adults with refractory cancers and genetic tumor predisposition syndrome such as neurofibromatosis and multiple endocrine neoplasia. She serves as the principle investigator of the Children’s Oncology Group Phase I Consortium and of the Department of Defense-sponsored Neurofibromatosis Consortium.

Events



Location:

Keck Center
500 5th St NW, Washington, DC 20001
Event Type :  
Meeting

Description :   

On January 21, 2020, the Committee on Childhood Cancers and Disability will hold an information gathering meeting in Washington, DC. This meeting will be open to the public and free to attend. Please contact Claire Saunders, CSaunders@nas.edu, for more information.


Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Claire Saunders
Contact Email:  CSaunders@nas.edu
Contact Phone:  (202) 334-3148

Supporting File(s)
-
Is it a Closed Session Event?
Some sessions are open and some sessions are closed

Publication(s) resulting from the event:

-


Location:

Keck Center
500 5th St NW, Washington, DC 20001
Event Type :  
Meeting

Description :   

On November 4, 2019 the Committee on Childhood Cancers and Disability will hold an information gathering meeting in Washington, DC. This meeting is open to the public and free to attend. If you would like to register for this event, please contact Claire Saunders, CSaunders@nas.edu, for more information.


Registration for Online Attendance :   
NA

Registration for in Person Attendance :   
NA


If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Claire Saunders
Contact Email:  CSaunders@nas.edu
Contact Phone:  (202) 334-3148

Supporting File(s)
-
Is it a Closed Session Event?
Some sessions are open and some sessions are closed

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

Paul A. Volberding
Jason R. Fangusaro
Julia Glade Bender
Brandon Hayes-Lattin
Tara Henderson
Pamela S. Hinds
Barbara L. Jones
Jennifer Koop
Valerae O. Lewis
David Pruitt
Leslie L. Robison
Nancy J. Tarbell
Scott L. Pomeroy
Emily S. Tonorezos
Brigitte Widemann

The following topics were discussed in the closed sessions:

Conflict and bias discussion
Review of task objectives
Discussion of potential research needs
Planning for second meeting

Date of posting of Closed Session Summary:
November 11, 2019
Publication(s) resulting from the event:

-

Publications

  • Publications having no URL can be seen at the Public Access Records Office
Publications

No data present.