Return of Research Results Portal: Frequently asked questions
1. How do I find the study that either I or my child took part in?
There are several ways to find the study you or your child took part in.
a. Type in a keyword or phrase into the Search box (example, acute lymphoblastic leukemia). The search box will show all studies with the word or phrase of interest in the study title;
OR
b. If you know the 8-character study ID number, please type this into the Search box and the specific study should come up (example, AREN0532 is a Wilms tumor study);
OR
c. Select a Disease Type from the dropdown menu provided (*See below for list of Disease Types and definitions).
OR
d. If you do not know the study name or ID number or cannot think of an appropriate search term or disease type, please ask your pediatric oncology team to assist you.
2. What studies are included in these result summaries?
Most Children’s Oncology Group studies that were completed from January 2012 onward will have their result summaries posted, once available.
3. How do I find the results of studies before January 2012?
A few studies activated prior to January 2012 have result summaries posted already, but the vast majority do not. If the study you are looking for is from before January 2012 and you cannot find it on the site, please ask your pediatric oncology team about the results.
4. What kind of results will be posted on this website?
Only summaries of COG research studies will be posted on the website. Individual results are never posted. If you wish to discuss more personal information, please discuss this with your pediatric oncology team.
5. When will the results be available?
The research study may take many years to finish enrolling enough participants to answer the main research questions. Even after the last patient has enrolled, the study results may take a year to be released. If you register your email address linked with the study of interest on the website, you will be automatically notified when the result summary is posted.
Note that sometimes further results will become available with time. You will be notified each time a revised summary is posted. This is why it is important to update your email address if it changes after you register to be notified.
6. What happens if my email address is no longer valid?
You are responsible for keeping your registered email address current. COG will not attempt to trace email accounts that are no longer active. You can enter a new email address at any time through the website. Your email address will be kept for 10 years and then automatically deleted. You must re-register beyond that time if you still want notification of new summary results.
7. Who creates the result summaries?
The result summaries are put together by the study team. The summary is reviewed by a member of the Patient Advocacy Committee, the Nursing Committee, a statistician, and COG and ROR Committee leadership before being posted on the website. This is to make sure the summaries are readable and accurate.
We value your feedback! Please provide feedback about any result summaries you read by completing a brief survey. A link to the survey is provided at the end of each summary.
8. Can other people see which study I or my child was on?
No personal information is posted on this website. Only summaries of study results are posted. You or your child will not be identified in any way.
9. What if I have further questions about the study?
We urge you to speak with your pediatric oncology team if you have further questions about the results of the study. We recommend not contacting the study chair, as they do not know you or your child in terms of putting your health care needs in context.
10. What if I cannot find the study I’m looking for?
Please send your inquiry to the COG Help Desk at HelpDesk@childrensoncologygroup.org.
11. What if I am having trouble figuring out the website?
Please contact the COG Help Desk at HelpDesk@childrensoncologygroup.org for any technical website issues. All questions related to interpreting the content of the result summaries should be directed to your pediatric oncology team.
*Disease Type Definitions
ALL: Acute Lymphocytic Leukemia
A type of leukemia (blood cancer) that comes on quickly and is fast growing. In ALL, there are too many lymphoblasts (immature white blood cells) in the blood and bone marrow. Also called acute lymphoblastic leukemia and acute lymphocytic leukemia.
AML: Acute Myelogenic Leukemia
A fast-growing cancer in which too many myeloblasts (a type of immature white blood cell) are found in the bone marrow and blood. AML usually gets worse quickly if it is not treated. It can spread outside the blood to other parts of the body, including the lymph nodes, spleen, liver, central nervous system (brain and spinal cord), skin, gums, and testicles. AML is most common in older adults. Also called acute myelogenous leukemia, acute myeloid leukemia, acute nonlymphocytic leukemia, and ANLL.
CCL: Cancer Control and Supportive Care
Cancer control and supportive care focuses on preventing or treating, as early as possible, the symptoms of cancer and the side effects caused by its treatment. The overarching goal is to understand and improve the quality of life of children, adolescents, and young adults with cancer with attention to the physical, psychological, and social well-being of patients and their families. Within the Children's Oncology Group, the Cancer Control and Supportive Care committee studies infection prevention, chemotherapy-induced nausea/vomiting, nutrition, neurotoxicity including neurocognition and hearing loss, as well as patient-reported outcomes and quality of life.
CNS: Brain Tumors
A tumor of the central nervous system (CNS), including brain stem glioma, craniopharyngioma, medulloblastoma, and meningioma. Also called central nervous system tumor.
DVL: Experimental Therapeutics (New Agents)
In clinical trials, refers to a drug (including a new drug, dose, combination, or route of administration) or procedure that has undergone basic laboratory testing and received approval from the U.S. Food and Drug Administration (FDA) to be tested in human subjects. A drug or procedure may be approved by the FDA for use in one disease or condition, but be considered experimental in other diseases or conditions. Also called investigational.
EWS: Ewing Sarcoma
A type of cancer that forms in bone or soft tissue. Also called peripheral primitive neuroectodermal tumor and pPNET.
GCT: Germ Cell Tumor
A type of tumor that begins in the cells that give rise to sperm or eggs. Germ cell tumors can occur almost anywhere in the body and can be either benign or malignant.
HEP: Liver Tumors
Primary liver cancer is a disease in which malignant (cancer) cells form in the tissues of the liver. Cancer that forms in other parts of the body and spreads to the liver is not primary liver cancer. The liver is one of the largest organs in the body. It has two lobes and fills the upper right side of the abdomen inside the rib cage. Liver cancer is rare in children. There are several different types of childhood liver cancer. The most common type is hepatoblastoma. The other less common types of childhood liver cancer are hepatocellular carcinoma, undifferentiated embryonal sarcoma of the liver, and infantile choriocarcinoma of the liver.
HOD: Hodgkin Lymphoma
A cancer of the immune system that is marked by the presence of a type of cell called the Reed-Sternberg cell. The two major types of Hodgkin lymphoma are classic Hodgkin lymphoma and nodular lymphocyte-predominant Hodgkin lymphoma. Signs and symptoms include painless, swollen lymph nodes, an enlarged spleen, fever, weight loss, fatigue, and night sweats. Also called Hodgkin disease.
LTE: Late Effects
A health problem that occurs months or years after a disease is diagnosed or after treatment has ended. Late effects may be caused by cancer or cancer treatment. They may include physical, mental, and social problems and second cancers.
NBL: Neuroblastoma
A type of cancer that forms from immature nerve cells. It usually begins in the adrenal glands but may also begin in the abdomen, chest, or in nerve tissue near the spine. Neuroblastoma most often occurs in children younger than 5 years of age. It is thought to begin before birth. It is usually found when the tumor begins to grow and cause signs or symptoms.
NHL: Non-Hodgkin Lymphoma
Any of a large group of cancers of lymphocytes (white blood cells). Non-Hodgkin lymphomas can occur at any age and are often marked by lymph nodes that are larger than normal, fever, and weight loss. There are many different types of non-Hodgkin lymphoma. These types can be divided into aggressive (fast-growing) and indolent (slow-growing) types, and they can be formed from either B-cells or T-cells. B-cell non-Hodgkin lymphomas include Burkitt lymphoma, chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL), diffuse large B-cell lymphoma, follicular lymphoma, immunoblastic large cell lymphoma, precursor B-lymphoblastic lymphoma, and mantle cell lymphoma. T-cell non-Hodgkin lymphomas include mycosis fungoides, anaplastic large cell lymphoma, and precursor T-lymphoblastic lymphoma. Lymphomas that occur after bone marrow or stem cell transplantation are usually B-cell non-Hodgkin lymphomas. Prognosis and treatment depend on the stage and type of disease. Also called NHL.
NUR: Nursing
A nurse is a health professional who may have a role in direct patient care as a registered nurse or advanced practice provider and/or who may be an administrator, case manager, educator, or researcher. Nursing research in the Children's Oncology Group focuses on patient/family education and symptom science research focused on understanding and reducing the burden of illness-related distress (physiological and emotional) experienced by children/adolescents with cancer and their family/caregivers.
OST: Osteosarcoma (Bone Tumors)
A cancer of the bone that usually affects the large bones of the arm or leg. It occurs most commonly in young people and affects more males than females. Also called osteogenic sarcoma.
PSY: Psychology (Behavioral Science)
Cancer treatment for young patients can cause unwanted side effects and other problems during and after treatment. The goal of behavioral science research is to better understand how cancer and cancer therapy affect the physical, social, and emotional well-being of children, adolescents, and young adults. This includes daily life skills, like getting dressed or taking care of themselves. It also includes their participation in valued activities, like social interactions and going to school or work. It includes mental health, like mood, as well as neurocognition, or how individuals concentrate, think, learn, and remember things.
RAR: Rare Tumors
All childhood cancers are rare; however, there are some subtypes of childhood cancer which are particularly rare, occurring in fewer than 2 per million children less than 18 years of age. Some of these tumors are specific to pediatrics (e.g., pancreatoblastoma, retinoblastoma) while others are more often seen in adulthood and occur only very rarely in children and adolescents (e.g., colon cancer). Tumors included in the Children's Oncology Group Rare Tumor Committee include retinoblastoma, nasopharyngeal carcinomas, salivary and other ear, nose, and throat (ENT) tumors, pleuropulmonary blastoma, ovarian and testicular stromal and sex cord-stromal tumors, pancreatic tumors (including solid pseudopapillary neoplasms and pancreatoblastomas), gastrointestinal tract tumors (including gastrointestinal stromal tumors and colorectal carcinomas), adrenal tumors such as adrenocortical carcinoma, thyroid cancers, and melanoma.
REN: Wilms / Kidney Tumors
A disease in which malignant (cancer) cells are found in the kidney, and may spread to the lungs, liver, or nearby lymph nodes. Wilms tumor usually occurs in children younger than 5 years old.
RET: Retinoblastoma
Cancer that forms in the tissues of the retina (the light-sensitive layers of nerve tissue at the back of the eye). Retinoblastoma usually occurs in children younger than 5 years. It may be hereditary or nonhereditary (sporadic).
RST: Soft Tissue Sarcoma, incl. Rhabdomyosarcoma
Cancer that forms in the soft tissues in a type of muscle called striated muscle. Rhabdomyosarcoma can occur anywhere in the body that has striated muscle.
SCT: Stem Cell Transplantation
A procedure in which a patient receives healthy stem cells (blood-forming cells) to replace their own stem cells that have been destroyed by treatment with radiation or high doses of chemotherapy. The healthy stem cells may come from the blood or bone marrow of the patient or from a related or unrelated donor. A stem cell transplant may be autologous (using a patient's own stem cells that were collected and saved before treatment), allogeneic (using stem cells from a related or unrelated donor), syngeneic (using stem cells donated by an identical twin), or cord blood (using umbilical cord blood donated after a baby is born).
