Towards the perfect ARM center: the European Union's criteria for centers of expertise and their implementation in the member states. A report from the ARM-Net.

Abstract:

BACKGROUND:Pediatric surgeons and patient organisations agree that fewer centers for anorectal malformations with larger patient numbers are essential to reach better treatment. The European Union transacts a political process which aims to realize such centers of expertise for a multitude of rare diseases. All the centers on a specific rare disease should constitute an ERN on that disease. ARM-Net members in different countries report on first experiences with the implementation of national directives, identifying opportunities and risks of this process. METHODS:Relevant details from the official European legislation were analyzed. A survey among the pediatric surgeons of the multidisciplinary ARM-Net consortium about national implementation was conducted. RESULTS:European legislation calls for multidisciplinary centers treating children with rare diseases, and proposes a multitude of quality criteria. The member states are called to allocate sufficient funding and to execute robust governance and oversight, applying clear methods for evaluation. Participation of the patient organisations is mandatory. The national implementations all over Europe differ a lot in respect of extent and timeframe. CONCLUSIONS:Establishing Centers of Expertise and a ERN for anorectal malformations offers great opportunities for patient care and research. Pediatric surgeons should be actively engaged in this process.

journal_name

Pediatr Surg Int

authors

Schmiedeke E,de Blaauw I,Lacher M,Grasshoff-Derr S,Garcia-Vazquez A,Giuliani S,Midrio P,Gamba P,Iacobelli B,Bagolan P,Brisighelli G,Leva E,Cretolle C,Sarnacki S,Broens P,Sloots C,van Rooij I,Schwarzer N,Aminoff D,Ha

doi

10.1007/s00383-015-3752-6

subject

Has Abstract

pub_date

2015-08-01 00:00:00

pages

741-5

issue

8

eissn

0179-0358

issn

1437-9813

journal_volume

31

pub_type

杂志文章
  • Minimizing surgery in complicated intussusceptions in the Third World.

    abstract::When presentation is delayed, intussusceptions may be difficult to reduce using standard enema regimens. Our endeavour to minimize the need for surgery in an environment where failed reductions are common has led to the development of an aggressive, non-operative method of reducing intussusceptions. One hundred and si...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-003-1099-x

    authors: Wiersma R,Hadley GP

    更新日期:2004-03-01 00:00:00

  • Acute appendicitis presenting as thigh abscess in a child: a case report.

    abstract::A case of retrocecal appendicitis is described in a 6-year-old male child who presented with thigh abscess. The presence of a positive psoas stretch test, feculent discharge, an enteric growth on bacteriological examination, and intraabdominal fluid collection on abdominal ultrasound provided clues to the presence of ...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-004-1356-7

    authors: Sharma SB,Gupta V,Sharma SC

    更新日期:2005-04-01 00:00:00

  • Anterior sagittal anorectoplasty for anovestibular fistula.

    abstract::Anterior sagittal anorectoplasty (ASARP) was used for the definitive correction in 107 cases of anovestibular fistula (AVF) between 1996 and 2005. These cases were subjected to three different types of treatment regimes during the same period. Majority of the cases (78) were operated in one stage where postoperatively...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-007-2019-2

    authors: Kulshrestha S,Kulshrestha M,Singh B,Sarkar B,Chandra M,Gangopadhyay AN

    更新日期:2007-12-01 00:00:00

  • The frequency, significance, and management of a right aortic arch in association with esophageal atresia.

    abstract::An unrecognised right aortic arch (RAA) found at thoracotomy may complicate the repair of oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF). This paper analyses the patient characteristics, peri-operative management, and outcome of 16 infants with a RAA, and proposes management guidelines. Between 1948 an...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830050505

    authors: Bowkett B,Beasley SW,Myers NA

    更新日期:1999-01-01 00:00:00

  • Congenital cystic mesoblastic nephroma.

    abstract::With widespread use of antenatal ultrasound, an increasing number of urinary-tract lesions are being detected, and the clinician is called upon to make management decisions. Parenchymal lesions of the kidney pose a special challenge because of the associated risk of the occurrence of malignancy. A case of an antenatal...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-002-0833-0

    authors: Murthi GV,Carachi R,Howatson A

    更新日期:2003-04-01 00:00:00

  • Giant purulent mesenteric cyst.

    abstract::Infected intra-abdominal cystic lymphangiomas are very rare. We report a case of a purulent mesenteric cyst, histologically a cystic lymphangioma, w which developed in a 1-year-old girl who presented with marked abdominal distension and high fever. Magnetic resonance imaging revealed that the huge cystic lesion occupi...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/BF00174584

    authors: Kubota A,Yonekura T,Kuroda D,Yasuda T,Kato M,Oyanagi H,Imano M,Sato T,Fukushima K,Okada M

    更新日期:1996-12-01 00:00:00

  • Surgery for ulcerative colitis in pediatric patients: functional results of 10-year follow-up with straight endorectal pull-through.

    abstract::Children and adolescents affected by ulcerative colitis (UC) frequently require colectomy because of refractory or chronic symptoms. The aim of this paper is to present our experience and 10-year follow-up results of 28 patients who underwent endorectal pull-through (ERPT) as surgical treatment for UC, with special re...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-004-1232-5

    authors: Ceriati E,Deganello F,De Peppo F,Ciprandi G,Silveri M,Marchetti P,Ravà L,Rivosecchi M

    更新日期:2004-08-01 00:00:00

  • Self-assessed physical health among children with congenital diaphragmatic hernia.

    abstract:PURPOSE:The aim of this long-term follow-up study was to investigate the current self assessed physical health in a CDH birth cohort at a single center. METHODS:Between 1990 and 2009, 195 children born with CDH were treated at Astrid Lindgren Children's Hospital. The primary survival rate was 85 %, and in 2010, 78 % w...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-016-3879-0

    authors: Öst E,Joelsson MÖ,Burgos CM,Frenckner B

    更新日期:2016-05-01 00:00:00

  • Perineal-mound defects.

    abstract::Perineal-mound (PMD) and genital-fold defects cause anorectal malformations (ARM) in both sexes. They are common in females and usually present as a low anomaly (except rectovestibular fistula). They are rare in males and present as an intermediate anomaly. A common embryological explanation for these defects with var...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章,评审

    doi:10.1007/s003830050562

    authors: Sharma AK,Goel D,Kothari SK

    更新日期:1999-01-01 00:00:00

  • Pyloric atresia associated with epidermolysis bullosa, malrotation, and high anorectal malformation with recto-urethral fistula: a report of successful management.

    abstract::Pyloric atresia (PA) is an uncommon anomaly that may be associated with many other congenital anomalies, the commonest of which is junctional epidermolysis bullosa (JEB). Most of the cases of PA associated with JEB (Herlitz syndrome) reported have been fatal. A case of PA associated with JEB, malrotation, and a high a...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830050572

    authors: Agarwala S,Goswami JK,Mitra DK

    更新日期:1999-01-01 00:00:00

  • Is high amplitude propagated contraction present after transanal endorectal pull-through for Hirschsprung's disease?

    abstract::The transanal endorectal pull-through (TAEPT) procedure is now widely performed for Hirschsprung's disease (HD), however, the colorectal function after TAEPT has not yet been adequately assessed. We evaluated the postoperative clinical outcome and colorectal function based on lower colonic manometry after TAEPT. Twent...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-007-1981-z

    authors: Kohno M,Ikawa H,Konuma K,Masuyama H,Fukumoto H,Morimura E

    更新日期:2007-10-01 00:00:00

  • The effect of phospholipids and fatty acids on tight-junction permeability and bacterial translocation.

    abstract::The activity of phospholipase A2 (PLA2) is elevated in the intestinal epithelia of patients with inflammatory bowel disease (IBD). We recently reported that PLA2 mediates hydrolysis of phosphatidylcholine (PC) to lysophosphatidylcholine (L-PC) when both are applied to the apical surface of cultured EC monolayers, resu...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830100592

    authors: Sawai T,Drongowski RA,Lampman RW,Coran AG,Harmon CM

    更新日期:2001-05-01 00:00:00

  • Application of endoscopic Ho:YAG laser incision technique treating urethral strictures and urethral atresias in pediatric patients.

    abstract::Endoscopic holmium:yttrium-aluminum-garnet (Ho:YAG) laser incision is a new method applied in pediatric urology recent years. To evaluate its therapeutic efficacy on treating the pediatric patients with urethral strictures and urethral atresias, a retrospective study was performed from June 2001 to July 2005 in a tota...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-006-1692-x

    authors: Futao S,Wentong Z,Yan Z,Qingyu D,Aiwu L

    更新日期:2006-06-01 00:00:00

  • From laparoscopic to open Kasai portoenterostomy: the outcome after reintroduction of open Kasai portoenterostomy in infant with biliary atresia.

    abstract:PURPOSE:Apparently superior result was observed after open Kasai portoenterostomy in infant with biliary atresia. Our institute stopped performing laparoscopic portoenterostomy since 2007. We aimed to investigate the outcome after reintroduction of open portoenterostomy. METHODS:27 non-syndromic infants underwent open...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-014-3499-5

    authors: Chan KW,Lee KH,Wong HY,Tsui SY,Wong YS,Pang KY,Mou JW,Tam YH

    更新日期:2014-06-01 00:00:00

  • Spinal anesthesia for inguinal hernia repair in infants: a feasible and safe method even in emergency cases.

    abstract:BACKGROUND:Inguinal hernia repair is the most frequently performed surgical procedure in infants and children. Especially in premature infants, prevalence reaches up to 30% in coincidence with high rates of incarceration during the first year of life. These infants carry an increased risk of complications due to genera...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-014-3590-y

    authors: Lambertz A,Schälte G,Winter J,Röth A,Busch D,Ulmer TF,Steinau G,Neumann UP,Klink CD

    更新日期:2014-10-01 00:00:00

  • Surgical intervention in vascular trauma in children.

    abstract:UNLABELLED:Vascular trauma is uncommon in children but may be complex. Arterial injury in children presents a challenge to the surgeon and may have long-term implications. Children have major advantage of a rich-collateral circulation but are still growing and developing. Decisions about when to operate remain an issue...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-011-3033-y

    authors: Tshifularo N,Moore SW

    更新日期:2012-04-01 00:00:00

  • Differences in nitrergic innervation of the developing chick cloaca and colorectum.

    abstract::The intrinsic innervation of the developing gut has long been a subject of investigation, but little is known regarding that of the embryonic cloaca. The cloaca, like the rest of the gastrointestinal tract, is intrinsically innervated by the enteric nervous system. Nitrergic neurons and fibres make up a large part of ...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-005-1590-7

    authors: O'Donnell AM,Bannigan J,Puri P

    更新日期:2006-01-01 00:00:00

  • Hydatid cyst of the pancreas: a case report with 5 years' follow-up.

    abstract::Primary hydatid disease of the pancreas is rare. The authors report a 3-year-old girl who had a cystic mass in the head of the pancreas with no other viscera involved. At laparatomy the entire endocyst was totally extracted from the surrounding pancreatic parenchyma. The postoperative course was uneventful. She is cur...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830050677

    authors: Arikan A,Sayan A,Erikçi VS

    更新日期:1999-01-01 00:00:00

  • Conservative management of splenic trauma: history and current trends.

    abstract::Evolution of the present-day policy of conservative management of ruptured spleen has been hailed as one of the most notable advances in pediatric surgery. Until 1971, routine splenectomy used to be the sacrosanct treatment for splenic trauma. It was universally believed that non-operative management carried a high mo...

    journal_title:Pediatric surgery international

    pub_type: 历史文章,杂志文章,评审

    doi:10.1007/s00383-003-0972-y

    authors: Upadhyaya P

    更新日期:2003-11-01 00:00:00

  • Ectopic intrathoracic liver.

    abstract::Accessory hepatic tissue, unlike accessory splenic and pancreatic tissue, is rare and has a limited and almost exclusively sub diaphragmatic distribution. Fewer than ten cases of intrathoracic ectopic liver have been reported so far in the literature. This paper reports a case that caused a diagnostic dilemma. ...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章,评审

    doi:10.1007/s003830000520

    authors: Babu R,Van der Avoirt A

    更新日期:2001-07-01 00:00:00

  • Primary reconstruction of a congenital anterior urethral diverticulum.

    abstract::A new technique for primary reconstruction of a congenital anterior urethral diverticulum is described. This operation eliminates the obstruction caused by the distal lip of the diverticulum and at the same time strengthens the unsupported urethral wall using tissue from the walls of the diverticulum. It has been used...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830050582

    authors: Bhatnagar V,Lal R,Mitra DK

    更新日期:1999-01-01 00:00:00

  • Combination of "patch, drain, and wait" and home total parenteral nutrition for midgut volvulus with massive ischemia/necrosis

    abstract::The successful use of a combination of "patch, drain, and wait" (PDW) and home total parenteral nutrition (TPN) in the management of a case of acute, catastrophic midgut volvulus in a 2-year-11-month-old boy with near-total ischemia/necrosis of his small intestine is reported. The PDW approach to the highly effective ...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:

    authors: Moore TC,Ng CS,Fonkalsrud EW,Ament ME

    更新日期:1997-03-21 00:00:00

  • Gender assignment and hormonal treatment for disorders of sexual differentiation.

    abstract:PURPOSE:To study the gender assignment and hormonal treatment advocated for disorders of sexual differentiation (DSD). METHODS:A study was done on patients who were reviewed in the Pediatric Intersex Clinic to evaluate the pattern of gender assignment and hormonal treatment advocated. RESULTS AND CONCLUSION:The patie...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-008-2232-7

    authors: Sharma S,Gupta DK

    更新日期:2008-10-01 00:00:00

  • Colo-colic intussusception in Henoch-Schönlein purpura.

    abstract::Intussusception is the commonest surgical complication of Henoch-Sch onlein purpura (HSP), occurring in 1.3%-13.6% of affected children. Colo-colic intussusception is a rare occurrence in HSP, with only three other reported cases. Intussusception in HSP almost always originates in the ileum (90%) or jejunum (7%), and ...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章,评审

    doi:10.1007/s003830050478

    authors: Choong CK,Kimble RM,Pease P,Beasley SW

    更新日期:1998-12-01 00:00:00

  • New insights into the pathogenesis of Hirschsprung's associated enterocolitis.

    abstract::The management of Hirschsprung's disease (HD) has made dramatic strides over the last 20 years. Research into the embryological development and migration of ganglion cell has enabled a greater understanding of the pathogenesis of the disease. Coupled with new techniques in surgery, such as laparoscopy-assisted pull-th...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章,评审

    doi:10.1007/s00383-005-1551-1

    authors: Murphy F,Puri P

    更新日期:2005-10-01 00:00:00

  • Borderline phylloides tumor in an 11-year-old girl.

    abstract::Phylloides tumor is an uncommon breast tumor in children. Only a few cases have been reported in the literature. A case of borderline phylloides tumor in an 11-year-old girl is described. ...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830050623

    authors: Selamzade M,Gidener C,Koyuncuoglu M,Mevsim A

    更新日期:1999-07-01 00:00:00

  • Hypospadias surgery: a 10-year review.

    abstract::Hypospadias surgery is one of the most difficult areas in pediatric urology and has been characterized by constant evolution. Some of the surgical techniques proposed in the past are now considered inadequate because of an unacceptable complication rate or poor functional and aesthetic results. The key for assessing a...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-004-1147-1

    authors: Marrocco G,Vallasciani S,Fiocca G,Calisti A

    更新日期:2004-03-01 00:00:00

  • Laparotomy or drain for perforated necrotizing enterocolitis: who gets what and why?

    abstract::Between 1974 and 1988, 86 newborns with perforated necrotizing enterocolitis (NEC) were treated by either laparotomy (usually involving a bowel resection and a temporary stoma) or a peritoneal drain under local anesthesia. The survival of babies in the laparotomy group was 57% versus 59% in the drained group. However,...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:

    authors: Azarow KS,Ein SH,Shandling B,Wesson D,Superina R,Filler RM

    更新日期:1997-02-01 00:00:00

  • The effect of the genitofemoral nerve division on the contralateral descended testis in the unilateral cryptorchidism model.

    abstract::It is widely accepted that there are degenerative changes and decreased spermatogenesis in the contralateral descended testis (CDT) in unilateral undescended testis (UUDT). While some investigators have postulated that the mechanism may be related to primary (congenital) or secondary (autoimmune, vascular, and neural)...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s003830000532

    authors: Abbasoglu L,Salman FT,Sakiz D,Bulut M

    更新日期:2001-07-01 00:00:00

  • One-staged or two-staged surgery for perforated choledochal cyst with bile peritonitis in children? A single center experience with 27 cases.

    abstract:PURPOSE:To report the authors' experience in the management of perforated choledochal cyst with bile peritonitis (PCC) in children. METHODS:Medical records of all children undergoing surgery for PCC at our hospital from May, 2005 to January, 2013 were reviewed. RESULTS:Twenty seven patients were identified, with a me...

    journal_title:Pediatric surgery international

    pub_type: 杂志文章

    doi:10.1007/s00383-014-3461-6

    authors: Ngoc Son T,Thanh Liem N,Manh Hoan V

    更新日期:2014-03-01 00:00:00