Javier Martin De Carpi
The “Paediatric IBD Porto Group” is a group of paediatric IBD experts from ESPGHAN whose goals are to generate collaborative international research and to provide a leadership role with regards to the current diagnosis and management of IBD in children.
The aims of the group are:
1. Research: To facilitate, and perform collaborative research of all types as agreed within the group, including ongoing registries
2. Guidelines: To develop management guidelines and statements on behalf of ESPGHAN regarding paediatric IBD
3. Advocacy: To provide experts' opinion and advocate on behalf of paediatric IBD patients when needed
4. Education: To improve medical care for children with IBD worldwide, by promoting good clinical practice via various educational tools, lectures and publications
This research collaboration in combination with provision of leadership in international guidelines and other activities requires intense commitment and hard work with restricted timelines. This necessitates opening the group to new collaborators with required expertise, while defining a mechanism to exclude members that are not capable of fulfilling these obligations to ensure keeping the group dynamic and productive.
1. Members of the Porto Group must be members of ESPGHAN.
2. Every site or center can have only one representative member. This membership is not transferable to other colleagues from the same institution or other institutions, nor can observers vote by proxy for members. Sites that have had two members prior to April 2013 when this clause has been agreed upon, will continue to have two members until one steps down or is not re‐elected.
3. Every member has one vote during ballots (voting for positions, new members, new initiatives etc.). Every site has one vote (i.e. only one vote will be accepted from sites with two members).
4. Membership requires active participation in group activities. Members who have been absent for more than two consecutive annual meetings (three or more), and who have not participated in group activities for over two years (collaborative research, guidelines development etc), will no longer remain members, but may re‐apply like other nominees.
5. Attendance of meetings and activities by observers may be allowed if cleared by the executive committee. These may include participants and research coordinators in relevant studies or historical members. The fee for observers will be decided by the executive committee and host as they are expected to cover their expenses. Observer status does not confer membership with the resulting rights and obligations as stated above. The arrangement of a meeting before/after the Porto meeting (e.g. the launch of a new study) is allowed if cleared by the executive committee, but finances have to be covered by the organizers of this meeting.
1. Three members of the Porto group serve as an executive committee (chair, secretary and financial liaison). Each committee member will be elected by secret ballot for a term of 3 years. One of these members will be elected specifically for the role of Chair of the group. No member may serve more than two consecutive terms on the committee.
2. From April 2015, each year‐ all those who became members before April 2015 and who have been members of the group >8 years will stand for reelection along with new candidates so existing members compete with new members.
3. From April 2015 and onward, the term of all elected (or re‐elected) members will be for a period of 5 years only.
4. From March 2017 and onwards, the term of all elected (or re-elected) members will be for a period of 3 years only.
5. Total number of Porto group members will remain 36.
6. New members will be elected from the open IBD Interest Group of ESPGHAN
7. Nominees are required to submit a CV, a personal statement why they should be elected to the Porto Group (1‐2 paragraphs) and a statement what they would like to promote within the group if elected (1‐2 paragraph).
8. Each eligible Porto group member will indicate which of the nominees (new and existing) should be elected according to the number of available slots (e.g. if 10 people compete for 5 slots, each member will indicate only 5 names). Nominees will be elected based on the cumulative points achieved by all voting members.
9. Members are expected to vote primarily according to the perceived merit to meet and promote the goals of the group. Geographic diversion will be also considered but as a secondary point.
10. Existing Porto members who are standing for re‐election are allowed to vote for other nominees but not for themselves in order to leverage chances with nominees from the interest group.
11. Porto members will become "senior members" after the age of 65 to allow new members to take their place. Senior members are welcome to participate in the Porto Group Meetings as observers abd are expected to cover all expenses related to their stay. Senior members reserve all rights as members of the Open Interest Group.
Open IBD Interest Group of ESPGHAN
1. The Open IBD Interest Group of ESPGHAN offers a forum to contribute to Paediatric IBD within ESPGHAN, even for those who are not members of the Porto Group.
2. The Porto Group will hold an annual meeting with the Interest Group during the ESPGHAN annual meeting.
3. Registration to the Interest Group and its management will be through the executive committee of the Porto Group, to allow complete and useful coordination of activities.
4. ESPGHAN members who wish to join the IBD Interest Group will register with the executive committee of the Porto Group, using the same template as for the Porto group (CV, personal statement and planned activities). The membership will be then automatic.
5. Members of the IBD Interest Group are expected to participate in the activities.
6. All Porto Group activities (except for the annual Porto Group meeting) will also be open to the Interest Group, such as guidelines, statements, position papers and collaborative research. An open call to participate in all Porto Group projects will be issued to the Interest Group.
1. Five members of the Porto group will serve as a research committee, including a chair, elected by the executive committee for 3 years (with the exception of the first term, which will be 2 years for 2 members, 3 years for the chair, and 4 years for 2 members to allow continuity). The main goal of the research committee is to promote, review, advise, and facilitate collaborative research, while ensuring excellence and impact.
2. Any member of the Porto and the Interest group may propose a research project to both groups by email and/or frontal presentation during the annual meeting; all proposals must be reviewed by the research committee prior to presentation/dissemination to the group.
3. The executive committee must ensure that every manuscript carrying the name of the Porto group is of sufficient merit, value and scientific rigor. This will be verified both at the time of the proposal submission and at conclusion of the study. Manuscripts will be approved by the executive committee for including the Porto group name prior to submission.
4. Each research project will be discussed in an annual meeting (at Porto or during ESPGHAN meeting) to allow the entire group to vouch for the study as a Porto group paper. If such presentation is not feasible (e.g. desire to start the project prior to the meeting or unavailability of the authors to present), the executive committee may decide, based on recommendations from the research committee, on behalf of the group and the group’s approval will be obtained by email.
5. The Research Committee will review all research proposals submitted by Porto and Interest Group Members and will:
6. The proposal must include the following:
7. Surveys and narrative reviews cannot typically be considered as Porto Group projects.
8. Governed by the above restrictions (#3-5; all of which must apply), all manuscripts arising from the Porto group will have the name of the group in the title (Paediatric IBD Porto Group of ESPGHAN). Author’s list will include as a suffix “on behalf of the Paediatric IBD Porto group of ESPGHAN”.
9. Research projects may be published in any journal according to the discretion of the co-authors.
10. All manuscripts carrying the name of the Porto group will be reported according to accepted standards to ensure that the final reports are of highest possible quality. Examples:
Position papers and guidelines
1. Position papers and guidelines will be established according to ESPGHAN guidance following an open call to all members of the Porto and the Interest Group.
2. Selection of members to participate in the projects will be decided (based on merit only) by the add‐hoc committees nominated by the Porto Group.
3. The final voting reported in the manuscript will include the writing group and Porto Group members. However, a pre‐final version will be sent to the open Interest group members for comments.
4. Position papers and guidelines will be published in JPGN unless explicitly required otherwise (e.g. joint guidelines with ECCO).
1. An annual 2 day meeting in Porto, Portugal where ongoing activities are reviewed.
2. One joint update meeting of both the Interest and the Porto groups during ESPGHAN annual meeting.
4. Ad hoc meetings for the guidelines working groups.
5. Multiple email‐ discussions via the two Google Groups.
Guidelines and statements
Four guidelines and statements are in process during 2018:
1. The role of endoscopy in Paediatric IBD.
2. IBD Unclassified guidelines.
3. Update of the ESPGHAN-ECCO UC guidelines- both ambulatory and acute severe colitis.
4. Update on the use of biosimilars in PIBD.
Previously published guidelines from the Porto Group
1." Nutrition in Pediatric Inflammatory Bowel Disease: A Position Paper on Behalf of the Porto Inflammatory Bowel Disease Group of the European Society of Pediatric Gastroenterology, Hepatology and Nutrition"; JPGN 2018
2. “PIBD-Classes criteria for diagnosing Pediatric IBD”; JCC 2017
3. “Surgical Management of Crohn Disease in Children: Guidelines fom the Paediatric IBD Porto Group of ESPGHAN”; JPGN 2017
4. “Use of Biosimilars in Paediatric Inflammatory Bowel Disease: A Position Statement of the ESPGHAN Paediatric IBD Porto Group”; JPGN 2015
5.“Consensus guidelines of ECCO/ESPGHAN on the medical management of paediatric Crohn's disease”; JCC 2014
6."ESPGHAN Revised Porto Criteria for the Diagnosis of Inflammatory Bowel Disease in Children and Adolescents”; JPGN 2014
7.“Management of Paediatric Ulcerative Colitis: Joint ECCO and ESPGHAN Evidence‐based Consensus Guidelines”; JPGN 2012
8.“Risk of Infection and Prevention in Paediatric Patients With IBD: ESPGHAN IBD Porto Group Commentary”; JPGN 2012
9.“Consensus for Managing Acute Severe Ulcerative Colitis in Children: A Systematic Review and Joint Statement From ECCO, ESPGHAN, and the Porto IBD Working Group of ESPGHAN”; AJG 2011
10. "Inflammatory bowel disease in children and adolescents: recommendations for diagnosis‐‐the Porto criteria"; JPGN 2005
1. We have successfully organized four Paediatric IBD Masterclasses for 40 ESPGHAN delegates in Florence (2015), Rotterdam (2016), Tel Aviv (2017) and Copenhagen (2018) in which some of the top IBD speakers in Europe participated.
2. The 5th Paediatric IBD Masterclass will be taking place in Màlaga, Spain from November 28 - 30 2019.
3. The first education IBD Advanced Course was established before the ESPGHAN Annual Meeting in Athens 2016 (one whole day) and continued in 2017 in Prague and 2018 in Geneva. More than 200 delegates paid to participate in the program, which received excellent feedbacks. The aim is to improve clinical skills in treating pediatric IBD in Europe. The 4th IBD Advanced Course will be taking place in Glasgow on June 05 2019.
4. The international PIBD conference belongs to the Porto IBD WG and is scheduled every 2 years. Next meeting (2019) will be held in Budapest (organized by Gabor Veres). In 2021 the meeting will be held in Edinburgh, as voted upon by the Porto Group following an open bid.
We were working with other organizations (ECCO, Canadian Pediatric IBD Network, and PIBDnet) to produce a joint statement on the role of using placebo in IBD trials in children (published in JPGN 2016).
Members represent the Porto Group in the EU parliament through various IBD activities.
Ongoing Original Research
1. EUROKIDS (led by Hankje Escher): Initiated in May 2004, is an ongoing registry that has been the core for multiple collaborative studies by the IBD Porto group. Currently, over 40 centers from 20 countries are participating and have jointly reported over 4000 patients into the registry with new‐onset IBD (data from baseline visit only) (see publication list).
2. GROWTH CD study (led by Arie Levine): A prospective multi‐center inception cohort of 340 children (17 European sites) aimed to assess outcomes and predictors of disease course in Crohn's disease. First manuscripts from this study have been published and others are planned for the upcoming year (see publication list).
3. IBD‐U project (led by Dan Turner): A project aimed to determine classification, outcome, treatment and phenotyping of IBDU in children. A total of 750 children with IBDU, Crohn's colitis and UC (250 each) have been enrolled from the Porto group sites. Two manuscripts have been published in Inflamm Bowel Dis journal (serology in IBDU + treatment and outcome of IBDU). A third manuscript has been submitted (diagnostic criteria of IBDU) and a fourth manuscript is in preparation (UGI and IBDU).
4. Cancer and Mortality (led by Arie Levine and Lissy de Ridder): This large study involves collaboration between 23 countries, three European societies and 20 national societies, in a prospective study. The PIBD C&M study was launched officially in July 2013, and we will try to identify new cases of death or cancer in paediatric IBD over 3 years, in order to gain clinical perspective as to causes of death (disease, drugs, drug combinations, surgery, infection etc).
5. Pouchitis (led by Dan Turner): A multicenter retrospective comparative study aimed to determine incidence, treatments and predictors in paediatric UC. An electronic database has been setup and ~150 cases have been recorded. The data are being analyzed at present.
6. Vedolizumab experience in children (led by Oren Ledder): Retrospective and prospective multicenter cohorts study. The prospective arm has also a sample collection part to analyze TDM. eCRF has been established and most cases for the retrospective arm have been recorded. Enrolment for the prospective arm has been started.
7. Anastomosis ulcerations as a model for early Crohn’s disease (JP Hugot): A retrospective study trying to understand this rare phenotype in the context of Crohn’s disease
8. INDUCE trial (Amit Assa): A prospective trial exploring the effect of high risk infliximab in acute severe colitis patients.
9. Long term outcome of pediatric ASC (Dror Shouval): A retrospective cohort exploring the 5 year experience of children with ASC.
10. Prediction of thiopurine effectiveness (Jiri Bronski): Utilizing the EUROKIDS database- this study will explore predictors of thiopurines success at baseline.
List of publications arising from the Porto WG:
1. Ledder O, Assa A, Levine A, Escher JC, de Ridder L, Ruemmele F, Shah N, Shaoul R, Wolters VM, Rodrigues A, Uhlig HH, Posovsky C, Kolho KL, Jakobsen C, Cohen S, Shouval DS, de Meij T, Martin-de-Carpi J, Richmond L, Bronsky J, Friedman M, Turner D. Vedolizumab in pediatric inflammatory bowel disease: a retrospective multi-center experience from the Paediatric IBD Porto group of ESPGHAN. J Crohns Colitis. 2017
2. Birimberg-Schwartz L, Zucker DM, Akriv A, Cucchiara S, Cameron FL, Wilson DC, Lazowska I, Yianni L, Paul SP, Romano C, Kolacek S, Buderus S, Pærregaard A, Russell RK, Escher JC, Turner D; Pediatric IBD Porto group of ESPGHAN. Development and validation of diagnostic criteria for IBD subtypes with an emphasis on IBD-Unclassified in children: a multicenter study from the Pediatric IBD Porto group of ESPGHAN. J Crohns Colitis. 2017
3. Amil-Dias J, Kolacek S, Turner D, Pærregaard A, Rintala R, Afzal NA, Karolewska-Bochenek K, Bronsky J, Chong S, Fell J, Hojsak I, Hugot JP, Koletzko S, Kumar D, Lazowska-Przeorek I, Lillehei C, Lionetti P, Martin-de-Carpi J, Pakarinen M, Ruemmele FM, Shaoul R, Spray C, Staiano A, Sugarman I, Wilson DC, Winter H, Kolho KL; IBD Working Group of ESPGHAN (IBD Porto Group). Surgical Management of Crohn Disease in Children: Guidelines From the Paediatric IBD Porto Group of ESPGHAN. J Pediatr Gastroenterol Nutr. 2017 May;64(5):818835
4. Aloi M, Birimberg‐Schwartz L, Buderus S, Hojsak I, Fell JM, Bronsky J, Veereman‐Wauters G, Koletzko S, Shaoul R, Miele E, Turner D, Russell RK. Treatment options and outcomes of pediatric IBDU compared to other IBD subtypes: a retrospective multicentre study from the
ESPGHAN Porto IBD group. Inflamm Bowel Dis 2016; 22(6):1378‐83.
5. Birimberg‐Schwartz L, Wilson DC, Kolho KL, Karolewska –Bochenek K, Afzal NA, Spray C, Romano C, Lionetti P, Hauer AC, Martinez‐Vinson C, Veres G,.Escher JC, Turner D. pANCA and ASCA in children with IBD‐unclassified, Crohn’s Colitis and Ulcerative Colitis ‐ a longitudinal report from the IBD Porto group of ESPGHAN. Inflamm Bowel Dis 2016; 0:1‐7.
6. Turner D, Koletzko S, Griffiths AM, Hyams J, Dubinsky M, de Ridder L, Escher JC, Lionetti P, Cucchiara S, Lentze MJ, Koletzko B, van Rheenen P, Russell RK, Mack D, Veereman G, Vermeire S, Ruemmele F. Use of placebo in pediatric inflammatory bowel diseases: A position paper from ESPGHAN, ECCO, PIBDnet and the Canadian Children IBD Network. J Pediatr Gastroenterol Nutrition 2016; 62(1):183‐7.
7. Winter DA, Karolewska‐Bochenek K, Lazowska‐Przeorek I, Lionetti P, Mearin ML, Chong SK, Roma‐Giannikou E, Maly J, Kolho KL, Shaoul R, Staiano A, Damen GM, de Meij T, Hendriks D, George EK, Turner D, Escher JC; Paediatric IBD Porto Group of ESPGHAN. Pediatric IBDunclassified Is Less Common than Previously Reported; Results of an 8‐Year Audit of the EUROKIDS Registry. Inflamm Bowel Dis. 2015 Sep;21(9):2145‐2153
8. de Ridder L, Waterman M, Turner D, Bronsky J, Hauer AC, Dias JA, Strisciuglio C, Ruemmele FM, Levine A, Lionetti P; ESPGHAN Paediatric IBD Porto Group. Use of Biosimilars in Paediatric Inflammatory Bowel Disease: A Position Statement of the ESPGHAN Paediatric IBD Porto Group. J Pediatr Gastroenterol Nutr. 2015 Oct;61(4):503‐8.
9. Levine A, Koletzko S, Turner D, Escher JC, Cucchiara S, de Ridder L, Kolho KL, Veres G, Russell RK, Paerregaard A, Burderus S, Greer MC, Dias JA, Veereman‐Wauters G, Lionetti P, Sladek M, de Carpi JM, Staiano A, Ruemmele FM, Wilson DC. The ESPGHAN Revised Porto Criteria for the Diagnosis of Inflammatory Bowel Disease in Children and Adolescents. J Pediatr Gastroenterol Nutr 2014; 58(6):795‐806
10. Ruemmele FM, Veres G, Kolho KL, Griffiths A, Levine A, Escher JC, Amil Dias J, Barabino A, Braegger CP, Bronsky J, Buderus S, Martín‐de‐Carpi J, De Ridder L, Fagerberg UL, Hugot JP, Kierkus J, Kolacek S, Koletzko S, Lionetti P, Miele E, Navas López VM, Paerregaard A, Russell RK, Serban DE, Shaoul R, Van Rheenen P, Veereman G, Weiss B, Wilson D, Dignass A, Eliakim A, Winter H, Turner D. Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease. J Crohns Colitis. 2014 Oct 1;8(10):1179‐207
11. Martinelli M, Strisciuglio C, Veres G, Paerregard A, Mocic A, Aloi M, Levine A, Martin Carpi FJ, Turner D, Del Pezzo M, Staiano A, Miele Eon behalf of Porto IBD Working Group of ESPGHAN. Clostridium difficile and pediatric Inflammatory Bowel Disease: a prospective, comparative, multicenter, ESPGHAN study. Inflamm Bowel Dis. 2014;20(12):2219‐25.
12. de Ridder L, Turner D, Wilson D, Koletzko S, de‐Carpi JM, Fagerberg UL, Spray C, Sladek M, Shaoul R, Roma‐Giannikou E, Bronsky J, Serban DE, Cucchiara S, Veres G, Ruemmele FM, Hojsak I, Kolho KL, Davies I, Aloi M, Lionetti P, Veereman G, Braegger C, Trindade E, Wewer V, Hauer A, Levine A. Malignancy and mortality in pediatric patients with inflammatory bowel disease: a multinational study from the Porto Pediatric IBD group. Inflamm Bowel Dis. 2014;20(2):291‐300
13. Ruemmele FM, Turner D. Differences in the management of pediatric and adult onset UClessons from the ECCO‐ESPGHAN‐consensus‐guidelines for the management of pediatric UC. J Crohns Colitis. 2014;8(1):1‐4.
14. Levine A, Turner D, Pfeffer Gik T, Amil Dias J, Veres G, Shaoul R, Staiano A, Escher JC, Kolho KL, Paerregaard A, Martin de Carpi J, Veereman Wauters G, Koletzko S, Shevah O, Finnby L, Sladek M. Comparison of Outcomes for Induction of Remission by Exclusive Enteral Nutritional and Medical Therapy in New Onset Pediatric Crohn's Disease: Evaluation of the Porto IBD Group "Growth Relapse and Outcomes With Therapy" (GROWTH CD) Cohort Study. Inflamm Bowel Dis. 2014;20(2):278‐85.
15. de Bie CI, Paerregaard A, Kolacek S, Ruemmele FM, Koletzko S, Fell JM, Escher JC; EUROKIDS Porto IBD Working Group of ESPGHAN.Disease phenotype at diagnosis in pediatric Crohn's disease: 5‐year analyses of the EUROKIDS Registry. Inflamm Bowel Dis 2013 Feb;19(2):378‐85
16. Levine A, de Bie CI, Turner D, Cucchiara S, Sladek M, Murphy MS, Escher JC; and the EUROKIDS Porto IBD Working Group of ESPGHAN. Atypical disease phenotypes in pediatric ulcerative colitis: 5‐year analyses of the EUROKIDS Registry. Inflamm Bowel Dis 2013;19(2):370‐377.
17. de Bie CI, Buderus S, Sandhu BK, de Ridder L, Paerregaard A, Veres G, Dias JA, Escher JC; EUROKIDS Porto IBD Working Group of ESPGHAN. Diagnostic workup of paediatric patients with inflammatory bowel disease in Europe: results of a 5‐year audit of the EUROKIDS registry. J Pediatr Gastroenterol Nutr. 2012 Mar;54(3):374‐80
18. Turner D, Levine A, Escher JC, Griffiths AM, Russell RK, Dignass A, Dias JA, Bronsky J, Braegger CP, Cucchiara S, de Ridder L, Fagerberg UL, Hussey S, Hugot JP, Kolacek S, Kolho KL, Lionetti P, Pærregaard A, Potapov A, Rintala R, Serban DE, Staiano A, Sweeny B, Veerman G, Veres G, Wilson DC, Ruemmele FM. Management of Pediatric Ulcerative Colitis: A Joint ECCO and ESPGHAN Evidence‐Based Consensus Guidelines. J Pediatr Gastroenterol Nutr 2012;55(3):340‐361.
19. Kolho KL, Turner D, Veereman‐Wauters G, Sladek M, de Ridder L, Shaoul R, Paerregaard A, Amil Dias J, Koletzko S, Nuti F, Bujanover Y, Staiano A, Bochenek K, Finnby L, Levine A, Veres G. Rapid test for fecal calprotectin levels in children with Crohn´s disease. J Pediatr
Gastroenterol Nutr 2012;55(4):436‐439
20. Shaoul R, Sladek M, Turner D, Paerregaard A, Veres G, Veereman‐Wauters G, Escher J, Amil Dias J, Lionetti P, Staiano A, Kolho KJ, De Ridder L, Nuti F, Cucchiara S, Shevah O, Levine A. Limitations of fecal calprotectin at diagnosis in untreated pediatric Crohn’s disease. Inflamm Bowel Dis 2012;18(8):1493‐1497.
21. Turner D, Travis SPL, Griffiths AM, Ruemmele FM, Levine A, Benchimol EI, Dubinsky M, Alex G, Baldassano RN, Langer JC, Shamberger R, Hyams JS, Cucchiara S, Bousvaros A, Escher JC, Markowitz J, Wilson DC, Assche G, Russell RK. Consensus for managing acute severe ulcerative colitis in children: a systematic review and joint statement from ECCO, ESPGHAN, and the Porto IBD working group of ESPGHAN. Am J Gastroenterol 2011; 106(4):574‐88.
22. IBD Working Group of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition. Inflammatory bowel disease in children and adolescents: recommendations for diagnosis‐‐the Porto criteria. J Pediatr