Program og presentasjoner til seminaret: Hereditary Thoracic Aortic Aneurysm and Dissection 28-30.11.2016

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​Monday 28.November 2016, Seminar & webinar

Topic: Hereditary Thoracic Aortic Aneurysm and Dissection (HTAAD)
Diagnostics and treatment.

Chair 09.00 – 12.00: Prof. Arnt Fiane, Department of thoracic and cardiovascular surgery.
 
09.00-09.15
Welcome. Arnt Fiane, Professor
Department of thoracic and cardiovascular surgery, Oslo University Hospital, Norway
 
09.15 -09.30
Why the subject HTAAD? Nina Riise, MD.
TRS Resource Centre for Rare disorders
 
09.30-10.35
HTAAD, Nomenclature, causes and clinical spectrum.
Reed Pyeritz, 'William Smilow Professor of Medicine'
Perelman School of Medicine, University of Pennsylvania
 
11.00-11.30
Next generation sequencing in diagnosis of HTAAD at Oslo University Hospital. Aleksandra Ratajska, MD
Department of clinical genetics, Oslo University hospital, Norway
 
11.40-12.05
Clinical spectrum of persons with HTAAD registered at TRS
Nina Riise, MD.
TRS Resource Centre for Rare Disorders
 
Chair 13.15 – 15.15: Odd Geiran, Prof. Emeritus, Department of thoracic and cardiovascular surgery, Oslo
University Hospital, Norway
 
13.15-14.05
Clinical follow up and pharmacological treatment of HTAAD
Reed Pyeritz, 'William Smilow Professor of Medicine'
Perelman School of Medicine, University of Pennsylvania
 
14.30-15.05
Surgical experience with HTAAD
Kirsten Krohg-Sørensen, Ass. Professor, Consultant Vascular Surgery.
Department of thoracic and cardiovascular surgery, Oslo University hospital, Norway
 
15.15-15.45
Summing up, end of the day.
Nina Riise, MD.
TRS Resource Centre for Rare Disorders
 

Tuesday 29.November 2016 Seminar & webinar

Topic: Marfan syndrome, diagnostic and treatment challenges

 Chair 09.00 – 12.00: Henrik Holmstrøm, Oslo University Hospital
 
09.00-09.10
Welcome. Henrik Holmstrøm, Oslo University Hospital
 
09.10-09.25
Children with Marfan syndrome. Diagnostics and treatment. Why is this important? Introduction. Nina Riise, MD. TRS Resource Centre for Rare disorders

09.25-10.05
Children with Marfan syndrome. How to diagnose and follow up? When to start medical treatment? – current evidence. MD Laura Muiño Mosquera
Department of Cardiology and Center for Medical Genetics, Ghent University Hospital

10.40-11.00
Sleep apnea from a clinical perspective
Hanne Berdal Sørensen, Head Senior Consultant
Department of Ear, Nose & Throat, Head and neck surgery. Lovisenberg Diakonale Hospital
 
11.00-11.40
Marfan syndrome and sleep apnea
Prevalence. Implications for aortic complications, fatigue and quality of life

Nele Gessler. MD. University Heart Center Hamburg
 
Chair 13.00 – 16.00: Ass. Professor Kirsten Krohg-Sørensen,
Dep. of thoracic and cardiovascular surgery, Oslo University Hospital
 
13.00-14.00
Restricting physical activity or making it possible? What can we safely recommend? 
 
13.00-13.15
Change of attitude from restriction to encouragement
Reed Pyeritz, 'William Smilow Professor of Medicine'
Perelman School of Medicine, University of Pennsylvania
 
13.15-13.30
What is the current documentation for physical restrictions in Marfan syndrome? Jostein Grimsmo, MD, PhD. LHL-clinics Feiring (Feiring Heart Clinic), Norway 
 
13.30-13.45
What advice can we give? Cardiology perspective
Julie De Backer, Prof . Dr. MD
Department of Cardiology and Center for Medical Genetics, Ghent University Hospital
 
14.15-14.35
Experiences with rehabilitation of Marfan syndrome patients in Germany,
University Heart Center Hamburg. Yskert von Kodolitsch, Prof. Dr. MD., MBA. University Heart Center Hamburg
 
15.00-15.45
I-SWOT (Analysis of Strengths, Weaknesses, Opportunities, and Threats as a Tool for Translating Evidence into Individualized Medical Strategies),
Yskert von Kodolitsch, Prof. Dr. MD., MBA
University Heart Center Hamburg
 
15.45-16.00
Summing up, End of the day. Ingeborg Lidal. MD, PhD, TRS.
 

Wednesday 30. November 2016. Seminar

Topic: National and international cooperation; how can we work together to the benefit of our patients?

Chair: MD Nina Riise, TRS
 
09.15-09.45
HTAAD – clinical experiences from Ghent
Julie De Backer, Prof. Dr. MD
Department of Cardiology and Center for Medical Genetics, Ghent University Hospital
 
09.45-10.15
HTAAD – clinical experiences from Hamburg
Yskert von Kodolitsch, Prof. Dr. MD., MBA
University Heart Center Hamburg
 
11.00-11.30
Preliminary findings from The Norwegian Marfan Study
Thy Thy Vanem, MD,PhD student
Dept. of Cardiothoracic Surgery, Oslo University Hospital
 
11.30-12.00
Follow up of adults and aging in Marfan syndrome. Discussion
 
13.00-14.00
Follow up of children with Marfan – consensus? Discussion

14.00 – 14.20
Conclusions and end of meeting
Nina Riise
 
15.00
Boat from Nesoddtangen