PROMS – PREMS online workshops

The Heart Rhythm Management Centre (HRMC) and Centre for Medical Genetics (CMG) of the University Hospital of Brussels, UZ Brussel, in collaboration with ERN GUARD-Heart, would like to invite you to four online workshops in our joined attempt to assess the specific psychosocial issues individuals undergoing (genetic) counselling for inherited cardiovascular disease encounter.
The purpose of these workshops is to work out a guideline or E-tool that will aid patients’ decisional process in clinical and genetic testing, treatment and rehabilitation for inherited cardiovascular diseases.

SAVE THE DATES (2020 – 2021):
Workshop 1: 29 October: 10.00 – 12.00
Workshop 2: 17 November: 15.00 – 17.00
Workshop 3: 8 December: 12.00 – 14.00
Workshop 4: 12 January: 12.00-14.00
Program workshops

WORKSHOP 1: 29 October 2020
Theme: Health-care professional centric.
Objective: What are the tools health care professionals use in cardio-genetics to measure patients’ psycho-social needs? (and presentation of results of the survey).
Speaker: Prof. dr. Nina Kupper, PhD, Associate Professor, Head of the Behavioral Physiology Lab (GO-LAB), Department of Medical & Clinical Psychology, Tilburg, The Netherlands
Agenda workshop 1
Presentation Nina Kupper

WORKSHOP 2: 17 November 2020
Patient-centric approach
What are the needs of patients with inherited cardiovascular disease?
MD Ruth Biller, chair of the German patient organisation ARVC-Selbsthilfe e.V. and chair of the European patient advocacy group of ERN GUARD-Heart
Agenda workshop 2
Presentation Ruth Biller

WORKSHOP 3: 8 December 2020
Theme: Family-centric approach
Objective: Illustration of psychosocial guidelines and indications in both acquired and congenital heart disease
Speaker: dr. Edward Callus, patient representative and president of the European Congenital Heart Disease Organisation, also a research fellow at the Università degli Studi di Milano and head of the clinical psychology service at the IRCCS Policlinico San Donato specialized in both acquired and congenital heart disease
Agenda workshop 3

WORKSHOP 4: 12 January 2021
Theme: Family-centric approach
Objective: Transforming recommendations from committee into specific cardio-genetics guidelines
Speaker: Prof. dr. Eveline Bleiker, psychologist, Division of Psychosocial Research and Epidemiology of the Netherlands Cancer Institute, Amsterdam, and at the Department of Clinical genetics of the Leiden University Medical Center, Leiden, The Netherlands and Dr. Margreet Ausems, Clinical geneticist, Associate Professor and Principal Investigator, Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, The Netherlands
Agenda workshop 4

If you have any questions, do not hesitate to contact Sarah van Pottelberghe or the projectmanagement of ERN GUARD-Heart.