webinar register page

Topic

The Value of Patient Reported Outcomes: The Patients' Voice; When a Hospital and A Patient Organization Work Together

Description

Presentation 1:

Title: The Value of Patient Reported Outcomes: The Patients' Voice

Date: Tuesday March 28, 2023, at 1 PM CT

Speaker: Nadine van der Beek, MD, PhD

Summary:
In this presentation, Dr. van der Beek will highlight the additional value of patient-reported outcomes to traditional outcomes such as walking distance or pulmonary function. She will show some important results from the IPA/Erasmus MC Pompe survey, which has existed since 2002, and discuss some important issues such as fatigue and quality of life. And as a last point, she will also address development of a Pompe-specific questionnaire which is able to measure patients' abilities in daily living.

Presentation 2:

Title: When A Hospital and A Patient Organization Work Together

Date: Tuesday March 28, 2023, at 1 pm CT

Speaker: Maudy Theunissen, MD

Summary: In this presentation I will show some more important results from the IPA/Erasmus MC Pompe Survey: what have we learned from patient-reported outcomes and why is this important? I will show what we have changed recently to improve the Pompe Survey and will provide information on how to participate. I will also address the first results of another collaboration between the Erasmus MC University Medical Center and the International Pompe Association (IPA): a questionnaire-based study on the impact of COVID-19 infection(s), the pandemic and associated control measures on patients with Pompe disease worldwide.

Time

Mar 28, 2023 01:00 PM in Central Time (US and Canada)

* Required information

Speakers

Nadine van der Beek, MD, PhD

Assistant Professor and Consulting Neurologist @Erasmus University

Dr. Nadine van der Beek is an assistant professor and consulting neurologist at the department of Neurology / Center for Lysosomal and Metabolic Diseases of the Erasmus MC University Medical Center. As a neurologist, she is involved mainly in the care of children and adults with neuromuscular diseases. She completed her training in neurology in Rotterdam, and for her further specialization in neuromyology she worked for several months at the Hôpital Universitaire Pitié-Salpêtrière in Paris. Nadine’s current scientific work focusses on the long-term effects of enzyme-replacement therapy in children and adults with Pompe disease, and the development and validation of new outcome measures. She is also involved in the translational research into the development of AON and lentiviral gene-therapy for Pompe disease. She has participated in several clinical trials in Pompe disease, and other neuromuscular diseases. Nadine is an active member of the European Pompe Consortium (EPOC), leading

Drs. Maudy Theunissen

Physician Researcher and PhD candidate @Erasmus University

Maudy Theunissen is a physician researcher and PhD candidate at the Center for Lysosomal and Metabolic Diseases of the Erasmus MC University Medical Center. She focusses on research into the mechanisms that underlie the differences in response to enzyme replacement therapy in adults with Pompe disease. By combining clinical data and patient reported outcomes she hopes to improve and personalize treatment. Besides research, she is involved in the care of adults with Pompe disease in the Netherlands.

Time Zone:

Your Information
Send to
Message preview	Hi there, You are invited to a Zoom webinar. When: Mar 28, 2023 01:00 PM Central Time (US and Canada) Topic: The Value of Patient Reported Outcomes: The Patients' Voice; When a Hospital and A Patient Organization Work Together Register in advance for this webinar: https://us06web.zoom.us/webinar/register/WN_NyUGU8ozRpGFUjbgsxhyHQ After registering, you will receive a confirmation email containing information about joining the webinar. ---------- Webinar Speakers Nadine van der Beek, MD, PhD (Assistant Professor and Consulting Neurologist @Erasmus University) Dr. Nadine van der Beek is an assistant professor and consulting neurologist at the department of Neurology / Center for Lysosomal and Metabolic Diseases of the Erasmus MC University Medical Center. As a neurologist, she is involved mainly in the care of children and adults with neuromuscular diseases. She completed her training in neurology in Rotterdam, and for her further specialization in neuromyology she worked for several months at the Hôpital Universitaire Pitié-Salpêtrière in Paris. Nadine’s current scientific work focusses on the long-term effects of enzyme-replacement therapy in children and adults with Pompe disease, and the development and validation of new outcome measures. She is also involved in the translational research into the development of AON and lentiviral gene-therapy for Pompe disease. She has participated in several clinical trials in Pompe disease, and other neuromuscular diseases. Nadine is an active member of the European Pompe Consortium (EPOC), leading Drs. Maudy Theunissen (Physician Researcher and PhD candidate @Erasmus University) Maudy Theunissen is a physician researcher and PhD candidate at the Center for Lysosomal and Metabolic Diseases of the Erasmus MC University Medical Center. She focusses on research into the mechanisms that underlie the differences in response to enzyme replacement therapy in adults with Pompe disease. By combining clinical data and patient reported outcomes she hopes to improve and personalize treatment. Besides research, she is involved in the care of adults with Pompe disease in the Netherlands.

webinar register page

Webinar Registration

Speakers

Share via Email

Switch Time Zone

Upcoming Meetings