Webinar Patient Registries Spina Bifida and Hydrocephalus


The International Federation for Spina Bifida and Hydrocephalus (IF) in collaboration with the Associazione Spina Bifida Italia (ASBI), the European Medicines Agency (EMA), and the Italian Ministry invite you to join us during the online webinar titled ‚ÄúPatient Registries for Spina Bifida and Hydrocephalus‚ÄĚ.¬†

When? June 16th from 9.15am to 12.15pm (CEST – time zone Brussels)

Where? Online, Zoom Webinar 

Who can join? Registration is open to everybody who is willing to learn more on patient registries, in particular for rare disorders such as Spina Bifida 

Patient registries can significantly contribute to enhancing existing knowledge and characterization of individuals with Spina Bifida and or Hydrocephalus. Patient registries moreover provide an important source of data for surveillance which can also inform scientific, clinical, and policy.

Besides our current understanding on the important topic of patient data, it is also meaningful to take into account possible factors prohibiting effective integrative approaches on national level. Analyzing interactions between science, practice, and policy is therefore of utmost importance. 

On a European level, joint action plans have been carried out to develop partnerships and strengthen infrastructures to improve multidisciplinary healthcare, evidence-based management and collection of secure patient data.

For this event we have invited special speakers for you including: Dr. Domenica Taruscio and Dr. Tiziana Grassi from the Italian National Center for Rare Disease. Moreover, invited guests from the Italian Ministry, the European Medicines Agency, and EUROlinkCAT will share their perspectives on the important role of patient registries. Last but not least, a special highlight of the webinar will include the official launch of the first national patient registry for Spina Bifida in Italy! We therefore invite you to join us during the online webinar! 

If you have further questions, don‚Äôt hesitate to contact the IF Team at [email protected]

Draft agenda

Moderators: Dr. Sylvia Roozen and Prof. Dr. Giovanni Mosiello

9.15 ‚Äď 9.30¬†

Welcome and opening speech

Maria Cristina Dieci РPresidente  
Associazione Spina Bifida Italia (ASBI)Dr. Sylvia Roozen – Secretary General
International Federation for Spina Bifida and Hydrocephalus (IFSBH)
9.30 – 9.45

Word of Welcome

Prof. Silvio Brusaferro – President

The Higher Health Institute

9.45 – 10.15

Patient Registries within Europe 

Dr. Kelly Plueschke  

European Medicines Agency (EMA)

10.15 – 10.30

Establishing a linked European Cohort of individuals with congenital anomalies EUROlinkCAT

Information and Support Needs survey for parents and carers of children with congenital anomalies

Dr. Amanda Neville


Dr. Elena Marcus


10.30 – 10.45

‚ÄúBenefits of a large register with many aims – the experience of the Polish Registry of Congenital Malformations‚ÄĚ


Prof. dr. Anna Latos-BieleŇĄska

Department of Medical Genetics, Poznan University of Medical Sciences

10.45 – 11.15

RegistRare: the Italian Spina Bifida project on a national patient registry and its stakeholders

Dr. Domenica Taruscio РDirector           

National Center for Rare Disease (CNMR) 

PhD and Dr. Paola Torreri РResearcher                                                                                                                 National Center for Rare Disease (CNMR) 

11.15 – 11.30

Patient Perspective – a Testimony

Eleonora Giannetti

Psychologist and member of ASBI Youth Group

11.30 – 11.45

Italian Spina Bifida Registry: clinical and organizational implications

Dr. Tiziana Redaelli – Clinician

Niguarda Hospital and Member of  the Scientific Committee

11.45 ‚Äď 12.00


All participants
12.00 – 12.15

Concluding Remarks
Meeting Closure

Dr. Sylvia Roozen РSecretary General 

International Federation for Spina Bifida and 
Hydrocephalus (IFSBH)

 Maria Cristina Dieci РPresidente

Associazione Spina Bifida Italia (ASBI)