ASCAT 2022 (January edition)
The SCD Sickle Cell Disease Patients Educational Sessions at the Annual Scientific Conference on Sickle Cell and Thalassaemia (ASCAT) is joint project of the ERN-EuroBloodNet together with ASCAT members aiming to:
- Creating a group of people living with Sickle Cell Disease (European and International) to let them express their needs and share experience and best practices
- Train patients to Patient Therapeutic Education and Public Patient Involvement in Research
- To evaluate in Europe the impacts of Patient Therapeutic Educational sessions on patients and their families
- To create further connections among health professionals and patients
- Making visible to the scientific community patients' needs and expectations
During the third edition, the collaboration with ASCAT and the ERN-EuroBloodNet was confirmed. The conference was held on January 2022 from 26th to 28th and it was under online format.
The representation of patients during this International Conference is one of the must-attend events of the year for consultants and specialist psychologists, nurses, scientists, and all relevant experts for Rare Anemias, so it is crucial that this event has patient representation at its core. Patients and parents patients invited to the Educational session have also the opportunity to participate in the full ASCAT Congress and learn about the latest advances in diagnosis, treatment, and emerging fields in haemoglobinopathies, and build a solid dialogue among patients and health professionals.
A team of SCD experts belonging to ERN-EuroBloodNet and ASCAT committee led the educational session. Prof. Beatrice Gulbis, from Hôpital Erasme/LHUB-ULB in Belgium; Prof Mariane de Montalembert, from AP-HP hôpital Necker, in France; Dr. Noemy Roy from Oxford University Hospitals NHS Foundation Trust, Dr Baba Inusa from Guy's and St Thomas' NHS Foundation Trust, Dr Raffaella Colombatti, from AO Padua in Italy and finally CHAKRAVORTY, Subarna, from King's College Hospital NHS Foundation Trust.
Topics were pre-identified by participants of the previous edition:
- Racism,
- Mental Health,
- Pregnancy, and
- Bone Marrow Transplant
Two interactive webinars and two interactive panels on those topics. Also for this edition, and in line with the general objectives of the project, participants of the sessions presented the outcomes at the closing plenary session of the ASCAT 2022.
54 people registered for the only event: 34 people living with SCD and 20 health professionals or other roles, mostly from European Country, and an average of 50 extra people connected to the patients' session through the general ASCAT 2022 congress platform.
Involving SCD patients in research and care is difficult and not often done. This disenfranchised group is typically challenging to engage. With our model of Educational training, we show to patients' community and scientific community that it is possible and meaningful, it makes a difference to the patient group and it strengthens the relationships between physicians and patients. Finally, it has been highly appreciated by the scientific and patient community to hear patients' perspectives during international scientific conferences.
On the ERN-EuroBloodNet EDU YouTube Channel is available the online experience of the ASCAT 2022 (January 26th-28th):
- SCD Patients Educational Session by ERN-EuroBloodNet&ASCAT: Spotlight on Racism: an interactive webinar with patients testimonies led by expert physicians. Open discussion with the audience.
- SCD Patients Educational Session by ERN-EuroBloodNet&ASCAT: Spotlight on Mental Health: an interactive webinar with patient testimonies led by two specialized psychologists. Open discussion with the audience
- SCD Patients Educational Session by ERN-EuroBloodNet&ASCAT: Spotlight on Pregnancy: an interactive panel led by an expert physician, a specialized obstetrician, and a patient's representative. Open discussion with the audience.
- SCD Patients Educational Session by ERN-EuroBloodNet&ASCAT: Spotlight on Bone Marrow Transplant: an interactive panel led by one expert physician and a patient representative. Open discussion with the audience.
Moreover, an interactive webinar program with people living with SCD and led by expert physicians and a patient testimony to open discussion with the audience was carried on. We invite you to view the sessions of your interestest (11 published sessions)!