27 Oct 2020
Patient Support Webinar: What is it Like to Participate in a Clinical Trial?

Watch Ergomed/PSR Orphan Experts‘ patient support webinar titled “What is it Like to Participate in a Clinical Trial?”.

This is a recording of a Webinar that we hosted in 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.

Topics covered in this webinar:

  • 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.

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.