BREAKING NEW GROUND IN PATIENT ACCESS TO CLINICAL TRIALS with Johan Lauritsen @PROBE

Alloutcoach

This is an episode recorded a few months ago after my guest, Johan Lauritsen, CEO & Founder of PROBE, had won the Evidence Generation category in the first-ever Medical Affairs Innovation Olympics hosted by Amedea Pharma. Johan is a medical student with prior gene editing experience, entrepreneur, keynote speaker, as well as a chronic Spinal Muscular Dystrophy type 2 patient. He is dedicating himself to facilitating and accelerating appropriate and timely patient access to clinical trials by developing a new program that researches and lists all the clinical trials across the globe for which a patient who is subscribed to his program is eligible based on health records submitted, and even directly connects the patients to the research investigator of the given study. Johan's passion and professionalism are both incredible gifts we can admire as he is in the progress of publishing the company's first prototype which is aimed at accelerating innovation in healthcare and democratizing patient participation, screening, and management of their own health. Lauritsen speaks about his personal journey as a chronic patient, and his modern perspectives on adding knowledge, transparency and technology to make clinical trials more accessible to all patients and relevant to them. Enjoy this candid conversation which showcases a new solution to improve health equity, health literacy, and patient engagement in research. You will hear Johan's tremendous accomplishments and calls to action for patients, their relatives and healthy volunteers to sign up for clinical trials and participate. 1:38 Can you share your unique background with the audience? 1:53 Johan was born with Spinal Muscular Dystrophy Type 2 (5qsma2) 5:59 For those not in healthcare, can you describe CRISPR gene editing? 8:03 Can you describe some of the processes people to know about and how clinical trials have changed. 13:25 Q: Is there routine prenatal screening or testing for SMA? In late 2022, all hospitals in Denmark implemented pre-natal screening for SMA. Johan fell when he was 3 and could no longer get back up. 14:33 SMA patients have won the Olympics before as well as the first ever Medical Affairs Innovation Olympics in the case of Johan 17:23 How has the data exchange in clinical trials accelerated and improved lately to ensure patients know about their results as soon as possible? 18:24 Clinical trials represent the most expensive, time consuming, and critical part of drug development. Patient recruitment continues to be a challenge because inclusion criteria are often determined from the investigators' perspectives rather than those of patients. Patients' inclusion criteria have now become more loose, allowing us to include more patients. 21:20 "Pharma companies do not have a realistic grasp of the real world patient population in a disease state for which they are developing treatments. Thus their study inclusion criteria are often inaccurate or irrelevant." 21:33 Only 15% of the minority populations are represented in clinical trials according to latest research. 22:10 Q: What is your company PROBE doing to improve access to clinical study for patients worldwide? 24:33 PROBE - While establishing a community of people that wants to participate in clinical trials, we are developing a tool that makes them accessible to them. We are also addressing health literacy as many patients want to be in a trial but they do not know where to find it or how to interpret the inclusion criteria or their own condition. 26:36 What kind of tool or app has PROBE created for clinical trial patients? 27:30 The App shows patients a list of clinical trials for which they are eligible. It connects the patients with the researchers, and therefore is a win-win for both researchers and patients. 29:47 Can the patient's health data be submitted by their provider or hospital? 31:34 Who are the members of the PROBE team? 34:13 Expecting to release its app at the end of January 2023.