We are pleased to announce that registrations have opened for the free patient-focused webinar “The Patient Experience: What is it Like to Participate in a Clinical Trial?” on 20 October, 2020.

About This Webinar
After exploring the landscape of drug development in our first webinar, our second webinar will focus on what it means to participate in a clinical trial, with an emphasis on the patient’s perspective.

It is crucial for patients and their families to understand what is involved, in addition to being aware of their rights and obligations, if they so choose to participate in a clinical trial.

Agenda

  • The importance of clinical trials
  • The process of screening and enrollment
  • The ‘Informed Consent’ process
  • Rights and obligations of a clinical trial participant
  • Logistical challenges and possible solutions
  • At the end of the webinar, you will have the opportunity to ask our experts any questions you may have.

To register for 20 October, 10am EDT / 3pm BST / 4pm CET: Register here

About our expert speakers

Bojana Mirosavljevic, PhD – Patient Engagement Officer, Ergomed/PSR Orphan Experts 
Bojana’s role is to ensure that the patient’s perspective is always considered during a clinical trial. Educated as a chemist and embryologist, in 2010 Bojana founded and is still president of an association for children with rare diseases in Serbia. In 2013, Bojana lost her daughter Zoya to a severe and rare form of Batten disease, and today, Serbia has Zoya’s law, for the prevention and diagnosis of rare diseases, which has saved more than 3,000 lives.

Elin Haf Davies, PhD. – CEO, Aparito 
Elin founded Aparito in 2015, a digital health company focused on developing patient centric digital outcomes to support decentralized clinical trials. Elin also serves as the Chair of Board of Trustees for Metabolic Support UK, a patient advocacy group supporting 400 rare inherited metabolic diseases.

About this series of webinars

These webinars are a joint project between the members of the Ergomed and PSR Orphan Experts “Patient Organization Representative Board”: Ergomed, PSR, Aparito and Findacure. The previous webinar, “Patient Support Webinar: Introduction to Drug Development and Clinical Trials” on 15 September, 2020, can be viewed by clinking here.