In this episode, WCG’s President of Patient Advocacy, Steve Smith, talks with Dr. Charlotte Owens, MD, FACOG, Medical Director at AbbVie Pharmaceuticals, who works in the general medicine therapeutic area with a focus on women’s health. As a physician, Dr. Owens describes her passion for pursuing a career that’s truly helpful for others and her desire to educate women on how to bring healthy children into the world. As her career grew into the clinical trials industry, Dr. Owens shares how this passion for helping others grew simultaneously, especially as she saw how bringing new drugs and therapies to market is so impactful in taking care of patients all over the world.

In this episode, Dr. Janet Wittes, Founder and President of WCG Statistics Collaborative sits down with WCG’s President of Patient Advocacy, Steve Smith. Their conversation focuses on the importance of reliability and efficiency in clinical trials, and how biostatisticians work closely with clinicians and patients to help ensure clear results from trials. Moreover, they dive into how biomarkers can serve as surrogate endpoints for a trial, especially in the case of rare disease studies.

In this episode, WCG’s President of Patient Advocacy, Steve Smith, interviews Dr. Jonathan Seltzer, MD, Chief Scientific Officer at WCG, expert on data safety monitoring boards, biomarkers, biostatistics, and clinical endpoints. During their conversation, Steve and Dr. Seltzer discuss how biomarkers are appropriate for the use of trials, especially when clinical data is tough to get. Part of this discussion turns to Duchenne’s Muscular Dystrophy (an inherited rare muscular disease) on how Patient Advocacy Groups are working with the FDA to define risk vs. benefit, and how promising a biomarker for this condition - as well as many other rare disorders - would be.

In this episode, WCG’s President of Patient Advocacy, Steve Smith, interviews Dr. Jeffrey Cooper, MD, MMM, Vice President of Process & Strategic Improvement at WCG, expert in the conduct of clinical trials, and Parkinson’s patient himself. During their conversation, Steve and Dr. Cooper highlight the strides clinical research has made for many therapeutic areas and the promise research has for individuals across the globe. With a specific focus on Parkinson’s disease, Dr. Cooper dives into his journey as a clinical trial participant and shares his experience on finding a trial, getting enrolled into the study, and his time spent throughout the trial.

In this episode, Steve Smith, WCG President of Patient Advocacy sits down with Julia Jenkins of the EveryLife Foundation to discuss the impact her organization has on giving patients a voice to legislators on Capitol Hill. Julia shares how patient communities can advocate for public policy changes, improve the FDA-regulatory approval process, and educate on the effectiveness of different trial designs for rare disease drug development. Through their conversation, Steve and Julia underscore the importance of collaboration between all clinical trial stakeholders to improve the study process.

In this episode, WCG’s President of Patient Advocacy, Steve Smith, sits down with Sarah Zentack, a Certified Genetic Counselor at InformedDNA and Leslie Urdaneta, Family Support Coordinator at the National MPS Society. Their discussion highlights the importance of genetic counseling and the intelligence patients can gain to better understand their treatment options, ensure they’re receiving the correct information and interpretation of results, and feel empowered to make the right choices for their care options.

In this episode, Karmen Trzupek, MS, CGC, Director of Ocular & Rare Disease Genetic Services and Clinical Trial Services at InformedDNA sits down with WCG’s President of Patient Advocacy, Steve Smith. During their conversation, Karmen and Steve talk about the criticality of incorporating genetic counselors into the medical management of a patient’s genetic diagnosis. 

In this episode, Sarah Tompkins, Patient Advocate of Ehlers-Danlos Syndrome, chats with WCG’s President of Patient Advocacy, Steve Smith. During their discussion, Sarah shares with us her experience being a patient with a genetic rare disease who is involved in a clinical trial.

In this episode, Mark Opler, PhD, MPH, Chief Research Officer at WCG MedAvante-ProPhase sits down with Steve Smith, WCG’s President of Patient Advocacy to discuss the achievements in the field of CNS and rare disease clinical research. Dr. Opler and Steve highlight the unmet need of therapies available for rare disease, the importance of patient enrollment, ensuring efficacy and safety throughout a trial, and how time is of the essence in every study that is conducted. 

In this episode, Amanda Moore, CEO of Angelman Syndrome Foundation speaks with Steve Smith, WCG’s President of Patient Advocacy. As a mom whose son has been diagnosed with Angelman Syndrome - a rare neuro-genetic disorder that affects 1 in 15,000 children - Amanda walks through the time from receiving initial diagnosis to the odyssey of her son’s patient journey in therapy and clinical trials.