OASIS Summer Symposium 2023 (english version)
OASIS summer symposium 2023
Holistic Care Hirschsprungs Disease: Patient centered care in Hirschsprung Disease (HSCR) and Total Colonic Aganglionosis (TCA)- Optimizing the pathway of care- including pre and postoperative care
27.7-29.7.2023 Rostock Warnemünde Hotel Neptun
We kindly invite you to our Summer Symposium on Holistic Care in Hirschsprungs Disease.
We are honoured to organise the first Paneuropean Scientifique Symposium on holistic care in Hirschsprung Disease and Total Colonic Agangliosis.
A Collaboration between clinicians and patient associations from Poland, UK, Italy, Netherlands, Austria and Germany will take place in Warnemünde organised by the Rostock Colorectal Center. Hirschsprung Disease (HSCR) is a rare disease affecting the capability to transport and pass stool resulting in obstruction of the bowel.
Approximately 1:5000 liveborn babies are affected. The most severe form Total Colonic Aganglionosis (TCA) affects 2-5 % of all children with HSCR.
Clinicians, researchers and patient representatives will discuss how to best enable holistic care.
During our symposium patient concerns are in the center of attention.
We will discuss excisting models of care and aim to develop pathways for holistic care in european collaboration.
Topics include:
1 Patient and Family needs before and after surgery
2 Patient support groups for Hirschsprung’s in Europe- ideas for cross collaboration
3 Optimal bowel management
4 Surgical Strategies in Hirschsprungs and Total Colonic Aganglionosis
5 Quality of Life Aspects, Longitudinal follow up, Continence Score
6 Transition
The Symposium will be open to everyone. We would love to involve clinicians (doctors and allied health professionals), scientist, patient associations to come together to share clinical experience and discuss how to enable best care for this patient group and their families.
Please register here
Please select from one of the following options;
for EUPSA members 10% reduction - please send member number
| early bird before 15.06.23 | regular after 16.06.23 | |
| consultant | 230 € | 260 € |
| trainee | 200 € | 230 € |
| alled health professional | 150 € | 180 € |
| students and patient association representative | 80 € | 110 € |
Account information:
Deutsche Bundesbank
IBAN: DE70 1300 0000 0013 0015 29
BIC: MARKDEF1130
Verwendungszweck: OASIS 2023 , Name
More information please contact us: OASIS.HolisticHirschsprungs{bei}gmail.com
This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575, Kindness for Kids: Stifung für Kinder mit seltenen Erkrankungen as well as from the DFG: Deutsche Forschungsgemeinschaft Förderung zur Durchführung internationaler wissenschaftlicher Fachtagungen.
This Event is EUPSA (European Paediatric Surgeons’ Association) approved.
Programm
DAY 1 |
| Chairs |
| Welcome Stefanie Märzheuser, Judith Lindert |
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9.15 - 10.30 | I Providing the theoretical framework of parents support groups in pediatric rare diseases: Hirschsprungs Disease & total colonic aganglionosis Sabine Alexander, Marijke Pfaff-Jongmann, Karolina Staszkiewicz IICommon needs in uncommon conditions: core components that reflect the need of parents and patients in A) Hirschsprung Disease and B) total colonic aganglionosis Ernica Pathway and Patient Journey- Carlotta de Filippo, Pisa Ernica Pathway Patient Association - Sabine Alexander Centralisation - Pernilla Sternström | Stefanie Märzheuser, Anette Lemli |
10.30 - 11.00 | Break |
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11.00 - 13.00 | III Patient centered view From patient side: Core Outcome Patient perspective- Panel Discussion Anette Lemli, Germany Duccio Cavalieri, Italy Karolina Staskiewicz, Poland Marijke Pfaff-Jongmann, Netherlands
From doctor side: Core Outcome Care Team perspective IV a) Long-term Monitoring and Clinical Evaluation CSOR: Children’s Surgery Outcome Reporting programme - Core Outcome Hirschsprung, Ben Allin, London Longitudinal Outcome Total Colonic Alessio Prini Prato, Alessandria b) Long-term Quality of Life, Sexual Function Joseph Davidson, London c) Longitudinal individual follow up Real-Time Data Collection and Assessment of Standardised Data Outcome Data in Children with Colorectal Conditions Stavros Loukogeorgakis, London | Roxana Rasoulli-Kirchmeier, Stavros Loukogeorgakis
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13.00 - 14.00 | Lunch break |
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14.00 - 15:30 | V Perioperative Care and Bowel Management Other health care professions: Physician Associate Nikita Halai, London Bowel Management Nurse: Galina Garbolinski , Rostock Perioperative bowel management: Judith Lindert, Rostock Bowel Management Training Seminar: SOMA |
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15.30 - 16.00 | Break |
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16.00 - 17.30 | Surgical Strategies Hirschsprung a 18+2min Joe Curry, London Jan-Hendrik Gosemann, Leipzig Andrzej Golebiewski, Gdansk Ernica guideline rectosigmoid Discussion 10min | Stefanie Märzheuser Annita Budzanowski
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19:00 | Drinks by the Beach |
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DAY 2 |
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9.30 - 10.30 | Surgical Strategies Total Colonic a 18+2min preoperative management TCA- Paola Midrio, Treviso Surgical Approach Stefanie Märzheuser, Rostock Alessio Prini Prato, Alessandria One other contribution- case to introduce? Discussion 10-30min | Joe Curry Judith Lindert
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10.30 - 11.00 | Break |
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11.00 - 12.00 | If problems remain after surgery a 15+5 Postoperative motility problems- Udo Rolle , Frankfurt Contributions of a Specialist Nurse Team- Julie Ann-Milburry, London Free manuscripts, cases
| Paola Midrio, Anna Modrzyk
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12.00 -13.00 | Expert Round My unsolved questions and cases 10+5min Case I - Anna Modrzyk, Zabrze Case II - Paola Midrio, Padova Case III- Andrzej Golebiewski Case IV-Joe Curry Case V- bring your case
| Stefanie Märzheuser Alessio Prini Prato |
13.00 - 14.00 | Lunch break |
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14.00 - 16.00 | V Transition Anette Lemli, Germany Carlotta de Filippo, Italy Karolina Staskiewicz, Poland
Panel Discussion Patient Representative groups
b) Paediatric surgery 40min Speed dating: european transition reality in Hirschsprungs 5min intro The dutch experience: Roxana Rasoulli-Kirchmeier The italian experience: Duccio Cavalieri The british experience: Annita Budzanowski The german experience: Felix Schulze The polish experience: Michael Parsierbek The austrian experience: Eva Amerstorfer The norwegian experience: Anders Holle The swedish experience: Pernilla Stenström
Talk Transition Joe Curry 15min
c) Adult Transition of adolescence with Hirschsprung – adult perspective 15min Von Ammon, Eberhard
Discussion 20min | Joe Curry Carlotta de Filippo |
16.00 - 16.30 | Break |
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16:30-18:00
| Holistic Continence Score- Satellite Seminar- sponsored by European Reference Network – Hybdrid a 15min Systematic Review Bowel Function Score Anders Holle, Oslo Real-Time Data Collection and Assessment of Standardised Data Outcome Data in Children with Colorectal Conditions Stavros Loukogeorgakis, London Eva Amerstorfer, Graz Discussion
| Judith Lindert, Eberhard Schmiedeke |
19:00 | Boat trip |
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DAY 3 |
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9.00 - 10.30 | Nutrition, Dietician, Microbiom
| Duccio Cavalieri Martina Kohl
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10.30 - 11.00 | Break |
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11.00 - 13.00 | Network Working Strategy/ Position Paper Construct Breakout Groups
| Joseph Davidson, Judith Lindert |
13.00 - 14.00 | Summing up and farewell |
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