Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment

Spinal Dysraphism (Spina Bifida) is a congenital malformation that virtually involves all systems in the human organism, requiring more than any other pathology a wide multidisciplinary expertise. Most medical and surgical specialties are involved in SB management and the expertise required spans among different ERNs.

Concept
The workshop will examine how to consider innovative diagnostic tools, new treatments and address future research on Spinal Dysraphism promoting discussion and exchange among researchers and clinicians from different ERNs.

5 areas of discussion have been identified:

• Genetic of neural tube defects
• Prenatal diagnosis: fetal MRI and Ultrasound, Amniotic Urinary markers of renal function, post-natal outcome
• Fetal Surgery
• Noninvasive tools in the diagnosis and follow-up of neurogenic bladder and SD as urodynamics, Radiomics, Urinary biomarkers
• Long-term sequelae of continence treatment considering the specific spinal dysraphism patient

Patient representatives will be present during the presentation and discussion of the different topics in order to focus future research on the unmet needs of spina bifida patients and on patients expectations.

Aim
To share participants expertise on research in different areas of Spinal Dysraphism and open the way to new research projects

Geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians – employees of or affiliated to an ERN-Full Member or affiliated Partner institution.
The approximate number of participants is 20 (excluding about 25 speakers).
With the participation of Pr Alain Verloes coordinator of ERN ITHACA and Prof Wout Feitz coordinator of ERN eUROGEN

Interactive presentations and discussions on different areas of interest. This workshop would be an opportunity to exchange ideas amongst researchers involved in the different fields of SD, between junior and senior level. For this purpose, on the first day there will be short presentations from experts in the different fields, but all participants whether “junior” or “senior” will be encouraged to present their data and their ongoing projects with short “flash” communications. On the second day, small-group working group activities have been scheduled in order to focus future topics for research.

To register, please fill the application form here until February 7th, 2022.

The training workshop is free of charge. Travel (maximum of EUR 350) and hotel expenses (2 nights) will be reimbursed for all selected (max. 20) ERN participants. Lunch and dinner will be provided on site for all participants.

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

The organizer together with one member of the WP17 Scientific Evaluation Committee will select the most appropriate workshop participants based on their CV and motivation. For this purpose, all applicants must sent a short CV and presentation/motivation letter.

Important update and information for already registered applicants: Registration deadline has been extended and closes on February 7th, 2022. The applicants who applied before January 28th 2022,  will receive final decision regarding their application on February 21st, 2022.

At the end of the training workshop, a Certificate of Attendance will be sent to the participants who attended the entire workshop and completed the survey.

Credits of Continuing Education in Medicine might be issued – to be informed as soon as
possible, if there is such a possibility.

Workshops will run in English.

Centre Hospitalier Universitaire de Rennes

2 Rue Henri le Guilloux

35033 Rennes (FRANCE)

If you have specific questions, please write to the workshop organizers:
Giovanni MOSIELLO giovanni.mosiello@opbg.net
Emmanuelle SAMSON emmanuelle.samson@chu-rennes.fr
Andrea MANUNTA andrea.manunta@chu-rennes.fr
Anne Hugon (ERN ITHACA) anne.hugon@aphp.fr

Questions related to organization of travelling hotel, dinner should be addressed to:
Centre de Référence Spina Bifida – Dysraphismes C-MAVEM
Centre Hospitalier Universitaire de Rennes
2 Rue Henri le Guilloux – 35033 Rennes (France)
reference.spina@chu-rennes.fr

For general inquiries about the workshops in the ERN RD Support and Training Program, please write
to:
Sanja.hermanns@ejprd-project.eu
RareEndoERN@lumc.nl

You will find the programme here.