WCG Talks Trials

Latest Episodes:

An Inside Look at the Role of Data Monitoring Committees with Dr. Jonathan Seltzer Feb 13, 2020

Show notes

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.

An Interview with Dr. Jeffrey Cooper: Clinical Trial Expert and Participant Feb 09, 2020

Show notes

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.

Julia Jenkins, EveryLife Foundation for Rare Diseases: Patient’s shape science-driven public policy Feb 09, 2020

Show notes

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.

Ensuring Genetic Counseling is Incorporated Into the Patient Experience: An Interview with Sarah Zentack & Leslie Urdaneta Jan 13, 2020

Show notes

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.

The Role and Importance of Genetic Counselors to Patients: An Interview with Karmen Trzupek of InformedDNA Jan 13, 2020

Show notes

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.

Sarah Tompkins, on Having Ehlers-Danlos Syndrome, Having a Mis-Understood Disease, and Taking a Lead in Advocacy Jan 13, 2020

Show notes

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.

Blazing New Trails in Rare Disease & CNS Clinical Studies: An Interview with Dr. Mark Opler Jan 13, 2020

Show notes

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.

An Inside Look at Angelman Syndrome Rare Disease: An Interview with Amanda Moore Jan 13, 2020

Show notes

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.

Learning How to See Differently: An Interview with Kristin Smedley, President of the Curing Retinal Blindness Foundation Jan 13, 2020

Show notes

In this episode, Kristin Smedley sits down with President of WCG Patient Advocacy, Steve Smith, to talk about the journey her two children with retinal blindness have experienced. Known as the “happiest mom of two blind kids” and a powerful TEDx talker, Kristin highlights the CRB1 rare genetic degenerative disease both of her boys are affected with. She underscores the importance of genetic diagnosis and shares the impact clinical trials and patient advocacy groups have had in finding a cure for this disease.

Developing Novel Treatments for Rare Disorders: A Look at MPS I with Dr. Emil Kakkis Jan 13, 2020

Show notes

In this episode, WCG’s President of Patient Advocacy, Steve Smith, talks with Emil Kakkis, MD, PhD, Chief Executive Officer of Ultragenyx Pharmaceuticals and President of the non-profit EveryLife Foundation for Rare Diseases organization. Known for his work in developing an enzyme replacement therapy for the rare disorder MPS I and his connection to the Ryan Foundation, Dr. Kakkis shares with us his experiences in being involved in bringing drugs to market and forming relationships with patients along the way.

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