Webinars Archives

The Clinical Trial Challenge: Boosting Clinical Trial Appeal in Patient Communities – Part 2

Part 2 of 2 Part Series

Clinical research is critical to progress towards new treatments and cures for all diseases. But engaging patients in clinical trial participation is often an uphill battle. Rare Patient Voice President Wes Michael and patient advocate Amy Gietzen discuss the results of a new RPV survey exploring factors that could make participation of greater interest to patients and family caregivers. This webinar is part two of a two-part flash webinar series, The Patient Journey in Clinical Research.

View the webinar below.

Panelists:

Wes Michael | Panelist
President, Rare Patient Voice

Amy Gietzen | Panelist
Patient Advocate, Columnist, and Public Speaker

Watch Part 1 Here

The Clinical Trial Challenge: Boosting Clinical Trial Appeal in Patient Communities – Part 1

Part 1 of 2 Part Series

Clinical research is critical to progress towards new treatments and cures for all diseases. But engaging patients in clinical trial participation is often an uphill battle. Hear from Rare Patient Voice Senior Vice President Pam Cusick and patient advocate Grace Charrier about the results of a new RPV survey exploring factors that could make participation of greater interest to patients and family caregivers.

View the webinar below.

Pam Cusick | Panelist
Senior Vice President, Rare Patient Voice

Grace Charrier | Panelist
Host, Cancer Convos with Grace B., and Cancer Advocate

To view the second part in this webinar series, click here.

Voices from Within: Humanizing Clinical Research Data: Episode 2- Conversations on DCTs: Data Privacy

3 PART FLASH WEBINAR SERIES

Join in on the growing topic of patient data protection and policies. In a time when healthcare has adopted technology and data collection software at an exponential rate, it is important to educate patients and stakeholders on what that standard for patient data collection should be.

Join Curebase’s Vice President of Clinical Trial Innovation, Jane Myles, Vice President of Clinical Operations, Sean Lynch, and Type 1 Diabetes Clinical Trial Participant, Phyllis Kaplan for Episode Two of our Voices from Within: Humanizing Clinical Research Data series.

View the webinar below.

Watch Webinar Episodes 1 & 3

Voices From Within: Humanizing Clinical Research Data:
Episode 1 – Patient Data Collection 101 Flash Webinar
Watch Here

Voices from Within: Humanizing Clinical Research Data:
Episode 3 – Conversations on Clinical Trials
Watch Here

Panelists:

Jane Myles
VP, Clinical Trial Innovation, Curebase

Phyllis Kaplan
Type 1 Diabetes Clinical Trial Participant

Sean Lynch
VP of Clinical Operations, Curebase

Voices from Within: Humanizing Clinical Research Data: Episode 3- Conversations on Clinical Trials

Jane Myles, Curebase’s VP of Clinical Trial Innovation, Sean Lynch, VP of Clinical Operations, and patient Qiana Alexander discuss the difference between clinical data and experiential data, focusing on the patient point of view. In their engaging conversation, they shared the importance of collecting patient experience data, how patient input/insights can be used to assist in trial design for decentralized clinical trials, and the difference in how DCTs enable gathering patient feedback.

View the webinar below.

Watch Webinar Episodes 1 & 2

Voices from Within: Humanizing Clinical Research Data:
Episode 1- Patient Data Collection 101
Watch Here

Voices from Within: Humanizing Clinical Research Data:
Episode 2 – Conversations on DCTs: Data Privacy
Watch Here

Panelists:

Jane Myles
VP, Clinical Trial Innovation, Curebase

Sean Lynch
VP of Clinical Operations, Curebase

Qiana Alexander
Lupus Clinical Trial Participant

Voices From Within: Humanizing Clinical Research Data: Episode 1 – Patient Data Collection 101 Flash Webinar

3 Part Flash Webinar Series

There are a variety of ways in which patient data can be collected in clinical research. As such, it’s critical to keep patients informed on these methods as they progress through trials. Jane Myles, Curebase’s VP of Clinical Trial Innovation and Director of Data Management, Kim Andreasen, discuss how patient data is collected in clinical trials.

View the webinar below. View article brief here.

Watch Webinar Episodes 2 & 3

Voices from Within: Humanizing Clinical Research Data:
Episode 2 – Conversations on DCTs: Data Privacy
Watch Here

Voices from Within: Humanizing Clinical Research Data:
Episode 3 – Conversations on Clinical Trials
Watch Here

Panelists:

Jane Myles

VP, Clinical Trial Innovation at Curebase

Kim Andreasen

Director, Data Management at Curebase

Meeting the EU Regulation: Plain Language Summaries & Protocol Synopses

On January 21, 2022, the European Medicines Agency (EMA) launched a new clinical trials website, Clinical Trials Information System (CTIS). The new website was launched with the application of the new clinical trials regulation, Regulation (EU) No 536/2014.

The regulation requests a plain language version of the protocol synopsis to be submitted as part of the initial application for a clinical trial.

Hear from CISCRP colleagues and industry experts who discuss creating a plain language protocol synopsis that can be used for non-expert audiences, preparing plain language summaries of trial results to meet the new regulation, and best practices for developing and implementing a plain language summary program.

Panelists:

To access more educational content about clinical trials and clinical research participation click here.

Tools of the Trade for Patient-Centric Clinical Development

ICON’s Center for Rare Diseases industry experts and clinical research panelists discuss how the Patient-Centric Trial Development Toolkit for rare diseases can incorporate and elevate the patient voice in a company’s drug development program.

About the Panelists

Click on each photo to read biography.

Straight Talk on Clinical Trials: Patient Perspectives on Clinical Trial Participation

Mike Wenger of Informa Pharma Intelligence and Wes Michael of Rare Patient Voice and panelists discuss insights from a recent survey of patients on their perspectives of clinical trials, reasons for non-participation in clinical research and ways that sponsors, advocacy organization and recruitment companies can refine the clinical trial enrollment process. Sponsored by Informa Pharma Intelligence and Rare Patient Voice.

View companion material: Q&A | Article Brief | Infographic

About the Panelists

Click on each photo to read biography.

Sarah Nechama Frisch

AWARE for All- Atlanta Webinars

Taking good care of your health is one of the most important things you can do for yourself.

Watch the AWARE for All – Atlanta Webinar Series to learn about the clinical trial process and how trial work. You can also view a panel discussion to hear personal stories from patients who participated in clinical trials and why they chose to participate and listen to healthcare professionals on how they help patients participating in clinical trials.

November 16th Webinar: Clinical Trial Overview Presentation

Watch to Hear From:

Rabih Dahdouh
Overview Presenter

November 17th Webinar: Panel Discussion

Watch to Hear From:

Tina Berry
Oncology Trial Participant and Project Manager at Northside Hospital Cancer Institute

Terp Vairin
Mental Health/Depression Trial Participant

Ashley Nealy
COVID-19 Trial Participant

Melissa Hardman
Trial Participant, Founder & CEO of Faces of Research, LLC

Glenn Bachmann
Lymphoma Trial Participant

November 18th Webinar: Panel Discussion

Watch to Hear From:

Phyllis Kaplan
Diabetes Trial Participant, Sr. Manager of Events & Community Engagement, CISCRP

Meghan McKenzie
Principal Inclusion, Internal Partnering in Chief Diversity Office at Genentech

Leah Szumita
Director of the Clinical Trial Support Center for the Leukemia & Lymphoma Society

Zach Mitchell
Director of Business Operations & Recruitment at iResearch Atlanta

Tamara Wakhisi
Medical-Surgical Research Supervisor, Oncology at Northside Hospital – Central Research Department

Yolanda Little
Diverse Patient Recruitment and Retention, Novartis

Mary Slomkowski
Director, Clinical Management CNS, Otsuka

Rare Disease Clinical Trials: After Participation, Paying It Forward

Hear from clinical trial participants on how they chose to become advocates to share their experiences in different ways in order to help others through the clinical trials journey and “pay it forward”. Part 3 of a 3-part series.

View the companion infographic here.