Abstract:
:There is a limited supply of organs for all those who need them for survival. Thus, careful decisions must be made about who is listed for transplant. Studies show that manifesting genetic disease can impact listing eligibility. What has not yet been studied is the impact genetic risks for future disease have on a patient's chance to be listed. Surveys were emailed to 163 pediatric liver, heart, and kidney transplant programs across the United States to elicit views and experiences of key clinicians regarding each program's use of genetic risks (ie, predispositions, positive predictive testing) in listing decisions. Response rate was 42%. Sixty-four percent of programs have required genetic testing for specific indications prior to listing decisions. Sixteen percent have required it without specific indications, suggesting that genetic testing may be used to screen candidates. Six percent have chosen not to list patients with secondary findings or family histories of genetic conditions. In hypothetical scenarios, programs consider cancer predispositions and adult-onset neurological conditions to be relative contraindications to listing (61%, 17%, and 8% depending on scenario), and some consider them absolute contraindications (5% and 3% depending on scenario). Only 3% of programs have formal policies for these scenarios, but all consult genetic specialists at least "sometimes" for results interpretation. Our study reveals that pediatric transplant programs are using future onset genetic risks in listing decisions. As genetic testing is increasingly adopted into pediatric medicine, further study is needed to prevent possible inappropriate use of genetic information from impacting listing eligibility.
journal_name
Pediatr Transplantjournal_title
Pediatric transplantationauthors
Graf M,Char D,Hanson-Kahn A,Magnus Ddoi
10.1111/petr.13402subject
Has Abstractpub_date
2019-06-01 00:00:00pages
e13402issue
4eissn
1397-3142issn
1399-3046journal_volume
23pub_type
杂志文章,多中心研究abstract::A 4-year-old boy presented 14 months after liver and small bowel transplantation with fever, diarrhea, elevated liver enzymes, thrombocytopenia and autoantibodies. Total gammaglobulins level was normal but the level of plasma IgA1 was very high. The blood PCR for Epstein-Barr virus (EBV) was negative. The ileal biopsy...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2004.00174.x
更新日期:2004-06-01 00:00:00
abstract::RTx is currently the best treatment for children with ESRD. This study retrospectively analyzed the outcomes of growth after RTx using the pediatric-to-pediatric allocation strategy and some factors that may affect it. From March 2012 to August 2016, 8 en bloc and 38 single pediatric RTxs were performed at our center ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13306
更新日期:2019-02-01 00:00:00
abstract::In many countries, adolescents can choose to register a deceased organ donation wish when they apply for a driver's license. They often receive education about deceased organ donation in order to make an informed choice. The objective of this review was to describe the effectiveness of school-based educational program...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1111/petr.12045
更新日期:2013-03-01 00:00:00
abstract::Many pediatric centers utilize a variety of protocols including preemptive plasmapheresis to prevent the recurrence of FSGS post-transplant. But the effectiveness of this expensive, time-consuming process of plasmapheresis in the prevention of FSGS recurrence is still unclear. We retrospectively reviewed all pediatric...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13154
更新日期:2018-05-01 00:00:00
abstract::Across pediatric organ transplant populations, patient and family psychosocial functioning is associated with important health-related outcomes. Research has suggested that pediatric heart transplant recipients and their families are at increased risk for adverse psychosocial outcomes; however, recent investigation of...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13110
更新日期:2018-03-01 00:00:00
abstract::We report the occurrence of epididymitis and orchitis 1 week after the onset of Listeriosis in an 11-month-old boy receiving an orthotopic liver transplantation for biliary atresia. Immunologic implications of Listeria monocytogenes-induced testicular inflammation are discussed, and the potential role of immunosuppres...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.2000.00113.x
更新日期:2000-05-01 00:00:00
abstract::Severe portopulmonary hypertension (POPH) is a contraindication for liver transplantation (LT) because of the high risk of postoperative heart failure. The early detection of POPH is important for patients with biliary atresia (BA). Brain natriuretic peptide (BNP) is known to be correlated with liver fibrosis in patie...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13203
更新日期:2018-08-01 00:00:00
abstract::Children with cholestatic liver disease have been thought to develop hepatic osteodystrophy resulting from vitamin D and calcium malabsorption, resulting in secondary hyperparathyroidism and osteomalacia or rickets. However, treatment with vitamin D has not always proven successful in improving the bone disturbance. T...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.2002.01060.x
更新日期:2002-04-01 00:00:00
abstract::From June 1985 to December 1998, 173 pediatric renal transplants were carried out in 170 patients at our center. From this pool, 73 patients (34 males and 39 females) with a follow-up of 48 months were examined. In all patients, ureteroneocystostomy was performed according to the Lich-Grégoire procedure. All patients ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.1999.00017.x
更新日期:1999-08-01 00:00:00
abstract::Major neurologic complications secondary to cyclosporine are well documented and are known to include confusion, cortical blindness, seizure, spasticity, paresis, ataxia and coma. Most previous reports attribute these to white matter central nervous system (CNS) lesions or white/grey matter border lesions. Many predis...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:
更新日期:1998-02-01 00:00:00
abstract::Adjusted survival outcomes following hepatic resection and transplantation for pediatric liver tumors have not been compared. To address this question, we conducted a retrospective cohort study using the SEER registry. While SEER lacks certain specifics regarding staging, chemotherapy, comorbidities, and recurrence, i...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12144
更新日期:2013-12-01 00:00:00
abstract::Methylmalonic acidemia with complete mutase deficiency (mut(0) type) is an inborn error of metabolism with high mortality and morbidity. LT has been suggested to be a solution to this disease, but elevation of urinary and blood MMA was still observed after LT. In this study, we measured dry blood spot MMA and its prec...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2009.01227.x
更新日期:2010-05-01 00:00:00
abstract:BACKGROUND:Studies of HRQoL after kidney transplant have yielded conflicting results. We sought to assess the impact of kidney transplant on HRQoL. METHODS:We performed a retrospective study using the PedsQL3.0ESRD module during dialysis and at 3 and 12 months following kidney transplant in 56 recipients. For the enti...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13333
更新日期:2019-03-01 00:00:00
abstract::Renal transplantation is the treatment of choice for children with ESRD offering advantages of improved survival, growth potential, cognitive development, and quality of life. The aim of our study was to compare the outcomes of LDKT vs DDKT performed in children at a single center. Retrospective chart review of pediat...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12881
更新日期:2017-05-01 00:00:00
abstract::A five-yr-old boy developed chronic liver failure and ESKD because of CHF and juvenile NPHP. He underwent sequential liver and kidney transplantation with a compatible blood type from his father, at five yr, seven months and five yr, 11 months old, respectively. Because the patient was not in ESKD, we initially perfor...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2011.01611.x
更新日期:2012-11-01 00:00:00
abstract::HSCT-associated thrombotic microangiopathy (TA-TMA) is a severe complication with a poor prognosis. Recently, it has been reported that complement system dysregulation, such as CFH autoantibodies and deletions CFH-related genes 3 and 1, induced TA-TMA. In addition, C4d-positive renal arterioles are both a good marker ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12450
更新日期:2015-06-01 00:00:00
abstract::HSCT has substantially improved pediatric acquired SAA patients' outcomes. Retrospectively, we attempted to assess the outcome of MRD HSCT in 65 pediatric patients referred to a single center from 1992 to 2012. We were particularly interested to find out whether source of SC (PB, n = 40 and BM, n = 25) significantly i...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12458
更新日期:2015-06-01 00:00:00
abstract::Tacrolimus-based immunosuppression in pediatric liver transplant recipients is known to be associated with EGID. Our goal was to determine the incidence, risk factors, and characteristics of EGID in our pediatric liver transplantation program. This study was a retrospective analysis of 38 pediatric liver transplant re...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00693.x
更新日期:2007-08-01 00:00:00
abstract::This study reports the clinical complication and infection rates of an active pediatric IT program that has never utilized bowel decontamination in either the donor or the recipient. All patients undergoing IT from 2003 to 2015 at a single pediatric IT center were reviewed. Post-transplant surgical, infectious, and im...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13164
更新日期:2018-05-01 00:00:00
abstract::The aim of this study was to analyze the impact of TAC on medium term (three-yr follow-up) renal function in pediatric liver transplant (OLT) recipients. Glomerular and tubular indices were retrospectively analyzed in 24 consecutive OLT pediatric recipients on TAC. CrCl increased significantly each month post-OLT (p =...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2011.01625.x
更新日期:2012-05-01 00:00:00
abstract::The safe observation time following pediatric renal transplant biopsy is unknown. To predict the safety of day-care pediatric renal transplant biopsy, we retrospectively evaluated the timing, incidence and severity of post-biopsy complications in children observed overnight. Biopsies were performed under real time ult...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00433.x
更新日期:2006-03-01 00:00:00
abstract::To evaluate social development of pediatric heart transplant (tx) recipients who have lived 15 or more years after transplantation. Among 498 pediatric patients, age less than 18 years, who underwent heart transplantation, at a single institution, 337 were performed between 1985 and 1998. We identified all who survive...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12853
更新日期:2017-03-01 00:00:00
abstract::RVIs are a significant cause of morbidity and mortality in immunocompromised children. We analyzed the characteristics and outcomes of infection by four respiratory viruses (RSV, adenovirus, influenza, and parainfluenza) treated at a pediatric tertiary care hospital in a retrospective cohort of patients who had receiv...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12022
更新日期:2013-03-01 00:00:00
abstract::There is increasing evidence that DSA are associated with poor graft survival, although there are little data in children. We aimed to describe the incidence of DSA in this group and to determine correlation with graft survival. HLA antibodies were analysed in 59 paediatric cardiac transplant recipients. Mean age 10.4...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01446.x
更新日期:2011-03-01 00:00:00
abstract::Depression is common in pediatric chronic kidney disease (CKD) patients. Depression is associated with inferior long-term outcomes. There is a paucity of studies that evaluate depression and possible associated factors in children and adolescents requiring renal replacement therapy (RRT). Cross-sectional study using C...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13591
更新日期:2019-12-01 00:00:00
abstract::Rural status of patients may impact health before and after pediatric LT. We used UI codes published by the USDA to stratify patients as urban or rural depending county residence. A total of 388 patients who had LT and who met criteria were included. Rejection, PTLD, and survival were used as primary outcome measures ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01452.x
更新日期:2011-05-01 00:00:00
abstract:: FSGS has a high recurrence rate after renal transplantation. To examine the effects of the use of preemptive and post-transplant PP on recurrence and graft outcome, we conducted a retrospective study on 34 pediatric patients (mean age 13±5 yr) with biopsy-proven pretransplant FSGS and who underwent a renal transplan...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2011.01478.x
更新日期:2011-08-01 00:00:00
abstract::HSCT is associated with a high risk of late morbidity. The aim of this study was to evaluate the frequency, time frame, risk factors, and possible etiology of pulmonary dysfunction following allogeneic HSCT in childhood. We evaluated the pulmonary function of 51 HSCT patients (>6 yr), by including FVC and FEV1 values ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12313
更新日期:2014-09-01 00:00:00
abstract::In their provocative paper, "Lung transplantation and survival in children with cystic fibrosis," Liou and colleagues state that "Prolongation of life by means of lung transplantation should not be expected in children with cystic fibrosis. A prospective, randomized trial is needed to clarify whether and when patients...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2008.00924.x
更新日期:2008-03-01 00:00:00
abstract::The availability of new and more effective anti-rejection therapy has succeeded in reducing the incidence of acute cellular rejection in first months post-renal transplant. This in turn has escalated the order of significance of recurrence of primary disease in the renal allograft as a cause for patient morbidity and ...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1046/j.1399-3046.2003.00151.x
更新日期:2004-04-01 00:00:00