EJP RD – ERN Workshop on Fetal and Postnatal multidisciplinary management in RD (Myelomeningocele and Lower urinary tract obstruction, LUTO)

Giovanni Mosiello, MD, FEAPU, FEBPS, Department of Urology: Neuro- Urology, Bambino Gesù Pediatric and Research Hospital, Rome – Italy; Member of eUROGEN and ITHACA

Rafal Chrzan, MD, PhD, FEAPU, Professor and Head of Division of Pediatric Urology, Jagiellonian University Medical College and University Children’s Hospital, Krakow –  Poland; Member of eUROGEN

Jean Marie Jouannic, MD, PhD, Professor and Head of Service de Médecine foetale, AP-HP.Sorbonne Université – Hôpital d’Enfants Armand-Trousseau, Paris – France; Member of ITHACA

Giovanni Montini, MD, PhD, Professor and Head of Division of Nephrology, Department woman, children newborns Area Salute della Donna, del Bambino e del Neonato, Fondazione IRCCS Ca’ Granda – Ospedale Maggiore Policlinico, Milan – Italy, Member of ERKNet.

4-6 June  2023
Krakow, Poland

Congenital lower urinary tract obstruction (LUTO) and Myelomeningocele (MMC)  are different pathologies but both have a huge impact on the renal function. Prenatal screening, with ultrasound and MRI, amniotic fluid urinary biomarker evaluation is crucial to make the correct diagnosis. Furthermore, both are now considered for foetal surgical interventions with many limitations as the outcomes are still debatable. Patients require a proactive nephrological approach and functional urology monitoring and management to preserve renal and bladder functions from the birth and also life-long.

The primary objective of this workshop is to train healthcare providers from different ERNs involved in the clinical research on MMC and LUTO.

This workshop is scheduled over 2 days starting late afternoon on the day of arrival. A brief introduction will be provided by the organizers followed by the first common session in order to prepare the participants to the upcoming discussions (prenatal diagnosis, foetal treatment, post-operative monitoring of foetuses and mother, post-natal nephrological and urological management). The most relevant issues related to two pathologies (MMC and PUV) will be thoroughly discussed during the second day of the WK, e.g. foetal surgical procedures, specific postnatal surgery requirements and follow up.

During the morning session on the third day the activities will be divided. Two working sub-groups will discuss practical cases and will work on the research projects in order to define new hypotheses as well as to critically evaluate the clinical trials.

1. Orphacode classification: new classification of MMC and other Spinal dysraphysm and how to apply it to nephro-urological management of neurogenic bladder
2. Prenatal diagnosis and monitoring of MMC and LUTO
3. Foetal Surgery: concerns regarding logistics and organization, specific technical aspects for MMC repair and for LUTO treatment
4. Postnatal nephrological management
5. Postnatal urological management

At the end of 2nd day of the Workshop the results will be presented and discussed during a plenary session in order to assess the outcome and define the trans-ERN activities for the future.

Patient’s representatives will be present during the presentation and discussion of every single topic in order to lead future research considering special needs of patients, their expectations, and then helping researchers to define a correct modality for research as well as a real usefulness of single research topic.

The workshop is primarily addressed to the healthcare providers working together with ITHACA, eUROGEN and ERKNet: Foetal surgeon, neonatologist, nephrologist, neurosurgeon, obstetrician, radiologist, paediatric urologist who are involved in the management of MMC and LUTO might be interested to participate in this event. The workshop might be of a great value for all ERN researchers: the junior and the senior ones as well as for the practising clinicians. Highly motivated junior members involved in ERN and transERN activities are warmly welcome. The senior clinical researchers (e.g. Team Coordinator) can benefit from the discussions that are scheduled in the program.

The program will include lectures given by experts, panel discussion involving all participants and hands-on sessions focused on clinical cases and evaluation of theoretical cross ERN scientific studies in order to train participants and to improve their analytical skills. MMC and LUTO overlap one another in some aspects. However, both topics require highly specific expertise and for this reason during the workshop common sessions for all participants as well as activities in 2 separate groups will be scheduled.

At the beginning a brief introduction will be provided by the organizers followed by lectures and open discussions on the prenatal diagnosis, foetal treatment, post-operative monitoring of foetuses and mothers, postnatal nephrological and urological management. Two working sub-groups will work separately on the research projects than can be initiated by the ERNs involved.

See the programme here.

To register please fill the application form here, before 16.April 2023.

The training workshop is free of charge.

Affiliated to an ERN-Full Member or Affiliated Partner institution.

The organizers together with one member of the WP17 Scientific Evaluation Committee will select the participants of the workshop, based on their motivation and experience.

All registered participants will be informed if they are selected to attend the workshop before 30 April 2023.

Certificate of Attendance will be issued to the participants who attended the entire workshop.  No credits of Continuous Education in Medicine will be issued. 

Workshops will run in English.

CKF-13
Ul. Fabryczna 13, 31-553 Krakow, Poland

If you have specific questions, please write to the workshop organizer:

• Giovanni Mosiello: giovanni.mosiello@opbg.net
• Rafal Chrzan: rafal.chrzan@uj.edu.pl
• Anne Hugon, ERN ITHACA Project Manager: hugon@aphp.fr

For general inquiries about the workshops in the ERN RD Support and Training Program please write to:

• reinhard@med.uni-tuebingen.de – RareEndoERN@lumc.nl