Abstract:
PURPOSE:Research using banked tissue is key to advancing risk-stratification and treatment of children with cancer. Knowledge of parental attitudes to ethical issues arising in tissue banking is very limited but essential in obtaining respectful consent. METHODS:One hundred parents of consecutively diagnosed children with cancer were offered a validated 34-item questionnaire. RESULTS:Respondents (n = 54) included 10 of 16 parents of deceased children. The majority (89%; n = 48) would agree to have tissue sent anywhere in the world but prefer pediatric aims (69%). Most (98%; n = 53) would permit genetic research, if it might improve the child's health, and 76% (n = 41) would permit it, even if no impact was anticipated. A minority (41%) would not allow painful, strictly research procedures, while 15% would regardless of the child's dissent. Just over half (54%; n = 29) wish to renew consent if stored tissue is used for another purpose. Most (98%) believe their child should confirm consent by the age of majority, but only 71% believe the mature child should be able to withdraw consent. A minority (n = 40; 74%) claim few or no rights to research profits; 83% believe these should be used to fund childhood cancer research. CONCLUSIONS:Parents are very supportive of tissue research, including genetic research. A majority of parents would prefer restricting research to pediatric conditions, and to be informed of results, even if of uncertain significance. These findings may assist Institutional Review Boards in assessing parentally perceived risks of research, and researchers in providing consent elements that support parents and adolescents in making fully informed choices.
journal_name
Pediatr Blood Cancerjournal_title
Pediatric blood & cancerauthors
McMurter B,Parker L,Fraser RB,Magee JF,Kozancyzn C,Fernandez CVdoi
10.1002/pbc.22716subject
Has Abstractpub_date
2011-12-15 00:00:00pages
1217-21issue
7eissn
1545-5009issn
1545-5017journal_volume
57pub_type
杂志文章abstract:BACKGROUND:Mutations in the DNMT3A, TET2, IDH1, and IDH2 genes carry prognostic significance and occur frequently in adult acute myeloid leukemia (AML). Leukemic mutations in all four genes have recently been implicated in aberrant DNA methylation, a hallmark of neoplasia. We previously reported that IDH1 mutations wer...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.23179
更新日期:2011-08-01 00:00:00
abstract:PURPOSE:Pediatric head and neck malignancies are managed with intensive multimodality therapy. Proton beam therapy (PBT) may reduce toxicity by limiting exposure of normal tissue to radiation. In this study, we report acute toxicities and early outcomes following PBT for pediatric head and neck malignancies. MATERIALS...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.26858
更新日期:2018-02-01 00:00:00
abstract:BACKGROUND:To evaluate efficacy, pharmacokinetics (PK) and pharmacodynamics of single-agent everolimus in pediatric patients with radiographically progressive low-grade glioma (LGG). METHODS:Everolimus was administered at 5 mg/m2 once daily as a tablet or liquid for a planned 48-week duration or until unacceptable tox...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.28787
更新日期:2021-02-01 00:00:00
abstract::To search for novel mechanisms that contribute to the pathophysiology of idiopathic thrombocytopenic purpura (ITP), we determined the whole blood gene expression profile in five ITP patients and five control samples. Using DNA microarrays that contained 24,473 unique putative genes, we found 176 cDNAs that were strong...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20981
更新日期:2006-10-15 00:00:00
abstract::Hepatoblastoma (HB) and biliary atresia (BA) are both rare conditions that occurred in the patient described. This is the second such case in the literature. An explanation for this apparent coincidence could possibly be found in the existance of pluripotent liver stem cells. In humans, small epithelial cells (SEC) be...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20115
更新日期:2004-10-01 00:00:00
abstract::The provision of tele-practice symptom management is often without the provision of evidence-based guidelines. Under the auspices of the Pediatric Oncology Group of Ontario, a nursing task force was established to appraise the evidence and develop guidelines. Promising new efforts to enhance symptom management through...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章,实务指引,评审
doi:10.1002/pbc.22993
更新日期:2011-10-01 00:00:00
abstract:BACKGROUND:In low- and middle-income countries, therapeutic options for advanced, refractory, or relapsing malignancies are limited due to local constraints such as cost of drugs, distance from oncology centers, and lack of availability of new anticancer drugs. Metronomics, which combines metronomic chemotherapy (MC) a...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.28508
更新日期:2020-09-01 00:00:00
abstract:BACKGROUND:Resource-rich countries tend to have a higher incidence of childhood acute lymphoblastic leukemia (ALL), whereas lower rates are seen in more deprived countries. This study describes the incidence of childhood acute leukemia in Brazil, an upper middle-income country, based on data from 16 population-based ca...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22736
更新日期:2011-01-01 00:00:00
abstract:BACKGROUND:In malaria-endemic countries in West Africa, sickle cell disease (SCD) contributes to childhood mortality. Historically, Liberia had regions wherein hemoglobin S and beta-thalassemia trait were mutually exclusive. Data on hemoglobinopathies in the Monrovia, the capital, are outdated and do not reflect urban ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.25875
更新日期:2016-04-01 00:00:00
abstract::A 6-year-old female was admitted with abdominal pain and a mass in the right abdomen. Her lactose dehydrogenase level was 1,200 IU/L, and neuron specific enolase was 120 ng/ml. Computed tomography scan confirmed a large right renal mass with necrosis. A right radical nephrectomy was performed. The tumor was completely...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20831
更新日期:2008-01-01 00:00:00
abstract::Germline or acquired mutations involving the GATA-binding protein gene (GATA2) have been linked to a variety of clinical conditions. In addition, patients harboring GATA2 mutations have a striking predisposition to develop myeloid malignancies, such as myelodysplastic syndrome or acute myeloid leukemia, but not acute ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.27649
更新日期:2019-06-01 00:00:00
abstract:BACKGROUND:The awareness that adolescents can have cancer is probably insufficient, not only among teenagers and their families, but also among physicians, and adolescent patients are reportedly often referred to qualified cancer institutes after a considerable delay. PROCEDURE:A prospective series of 425 patients (28...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24312
更新日期:2013-04-01 00:00:00
abstract:BACKGROUND:Alveolar soft-part sarcoma (ASPS), a rare vascular sarcoma with a clinically indolent course, frequently presents with metastases. Vascular endothelial growth factor (VEGF) is a promising therapeutic target. In a phase-II trial of the VEGF receptor inhibitor cediranib for adults with ASPS, the partial respon...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章,多中心研究
doi:10.1002/pbc.27987
更新日期:2019-12-01 00:00:00
abstract:BACKGROUND:Platelet counts below normal values define thrombocytopenia. However, platelet counts alone do not reveal the underlying pathomechanism. New blood cell counters provide additional information on platelet size and volume, and enable the distinction of sub-populations. In this preliminary study, we evaluate wh...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22907
更新日期:2011-10-01 00:00:00
abstract:BACKGROUND:Outcomes for patients with oncologic disease and/or after hematopoietic stem cell transplant (HSCT) requiring intensive care unit admission have improved, but indications for and outcomes after extracorporeal membrane oxygenation (ECMO) support in this population are poorly characterized. PROCEDURE:We analy...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章,多中心研究
doi:10.1002/pbc.28403
更新日期:2020-10-01 00:00:00
abstract:BACKGROUND:We sought to determine the prevalence of abnormal pulmonary function tests (PFTs) in a cohort of children who had received whole lung irradiation (WLI) for treatment of metastatic disease. PROCEDURE:This was a retrospective (1988-2003) chart review that included all children treated at our institution with ...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.20457
更新日期:2006-02-01 00:00:00
abstract:BACKGROUND:Bleomycin is associated with pulmonary toxic side effects including pneumonitis and pulmonary fibrosis. We evaluated the prevalence of long-term pulmonary function abnormalities in children receiving bleomycin therapy in the context of current chemotherapeutic regimens. METHODS:A retrospective review of pat...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.25098
更新日期:2014-09-01 00:00:00
abstract:BACKGROUND:Fanconi anemia (FA) predisposes to hematologic disorders and myeloid neoplasia in childhood and to solid cancers, mainly oral carcinomas, in early adulthood. Few cases of solid cancers have been reported in childhood. PROCEDURES:We conducted a national retrospective study of solid tumors occurring in patien...
journal_title:Pediatric blood & cancer
pub_type: 临床试验,杂志文章,多中心研究
doi:10.1002/pbc.25303
更新日期:2015-03-01 00:00:00
abstract::Deferasirox (Exjade®, Novartis) is a widely used oral iron chelator for the treatment of patients with iron overload due to chronic transfusion therapy for diseases such as β-thalassemia and sickle cell disease. Renal side effects of deferasirox are common and include non-progressive increases in serum creatinine, how...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22711
更新日期:2011-04-01 00:00:00
abstract:BACKGROUND:Thiotepa and carboplatin are known to be active in central nervous system tumors. Topotecan potentiates the anti-cancer effects of alkylators and crosses the blood-brain barrier. We present ten patients with recurrent or progressive central nervous system malignancies treated on a myeloablative regimen using...
journal_title:Pediatric blood & cancer
pub_type: 临床试验,杂志文章
doi:10.1002/pbc.22347
更新日期:2010-04-01 00:00:00
abstract:BACKGROUND:The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models of bereavement with a focus on relationships and exploration of parents...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.26046
更新日期:2016-09-01 00:00:00
abstract::Hemoglobin O-Arab [Beta 121 Glu → Lys] (Hb O-Arab) is a rare abnormal hemoglobin (Hb) whose clinical and hematological features have been described in adults but not in children. We report three children, 9, 12, and 36 months of age, with homozygous Hb O-Arab and assess the value of supplementary folic acid as treatme...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24414
更新日期:2013-03-01 00:00:00
abstract:BACKGROUND:Thyroid dysfunction has been reported in up to 52% of patients 1.4 years after treatment with (131) I-Metaiodobenzylguanidine (MIBG) in children with neuroblastoma (NBL), despite the use of potassium-iodide (KI). Our aim was to investigate if the incidence and severity of thyroid damage increases in time. M...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.24681
更新日期:2013-11-01 00:00:00
abstract:BACKGROUND:Hematopoietic stem cell transplantation (HSCT) provides a curative therapy for children severely affected by sickle cell disease (SCD). Rejection-free survival after matched sibling donor (MSD) HSCT is very high, but adoption of HSCT as a curative SCD therapy has been slow. In this study, we assess providers...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.28861
更新日期:2021-03-01 00:00:00
abstract:BACKGROUND:Hepatoblastoma is a rare malignancy of childhood. The scarcity of adequate cell models has limited our understanding of this tumor. Here we describe and characterize a new human liver tumor cell line, Hep293TT, derived from an aggressive childhood hepatoblastoma. PROCEDURES:Hep293TT cells were established u...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22187
更新日期:2009-12-01 00:00:00
abstract:OBJECTIVE:To examine the level of children's understanding of informed consent in clinical trials and factors that may influence these processes. DESIGN:Twenty nine children who were included in clinical trials for treatment of cancer or HIV, were offered the possibility to complete a semidirective interview, with par...
journal_title:Pediatric blood & cancer
pub_type: 临床试验,杂志文章
doi:10.1002/pbc.21359
更新日期:2008-05-01 00:00:00
abstract::Chronic granulomatous disease (CGD) is an immune deficiency characterized by defective neutrophil function and increased risk of life-threatening infections. Allogeneic hematopoietic cell transplantation is curative for CGD, and conditioning regimen impacts transplant-related outcomes. We report a single-center prospe...
journal_title:Pediatric blood & cancer
pub_type: 临床试验,杂志文章
doi:10.1002/pbc.28030
更新日期:2020-01-01 00:00:00
abstract:BACKGROUND:An adapted LMB 96 derived protocol for B-cell non-Hodgkin lymphoma (NHL) was implemented at the pediatric oncology unit of the Children Welfare Teaching Hospital in Baghdad (Iraq) from 2000 to present. The purpose was to evaluate the feasibility and efficacy of this intensive therapeutic regimen in a limited...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.22905
更新日期:2011-04-01 00:00:00
abstract:BACKGROUND:Although weight loss and lack of linear growth occur in children with cancer, growth history is not included in research that aims to determine nutritional status in children newly diagnosed with cancer. Therefore, this study aimed to determine weight loss and lack of linear growth in this patient group. PR...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章,评审
doi:10.1002/pbc.25301
更新日期:2015-02-01 00:00:00
abstract:BACKGROUND:Wilms tumor is the most common pediatric renal malignancy, but the parameters that are important to its invasion capacity are poorly understood. The aim of this study was to identify new proteins associated with the invasion capacity of Wilms tumor. PROCEDURE:Gene expression profiles for 15 primary Wilms tu...
journal_title:Pediatric blood & cancer
pub_type: 杂志文章
doi:10.1002/pbc.23003
更新日期:2011-12-01 00:00:00