Rare Disease Clinical Trials: How to Prepare for When the Clinical Trial Ends

Part 2 of a 3-part series. Learn about clinical trials, what it means to participate, and what happens when the clinical trial is completed. Moderated by Marsha Lanes of NORD (National Organization for Rare Disorders).

Access the webinar here.

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Moderator
Marsha Lanes,
Genetic Counselor/
Medical Editor,
NORD

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Panelist
Dr. Tracy Dixon-Salazar,
Executive Director,
Lennox-Gastaut
Syndrome Foundation

Panelist
Richie Kahn, MPH
Senior Director,
Patient Engagement,
Medable Inc.

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Panelist
Dana Holinka,
Operating Board Member,
TSC Alliance

PLSP: Plain Language Summaries of Publication

This webinar provides a greater understanding on how Plain Language Summaries of Publication (PLSP) can help meet the demand and expectations for the disclosure of clinical trial results. Additionally, gaining insights on how to plan and turn a scientific manuscript into a PLSP.

Access the webinar here.

Democratizing Clinical Research

Scaling access and inclusion to clinical research is key to finding medications, therapies & treatments that work for all. Industry professionals discuss barriers to clinical trial participation and ways to address them.

Access webinar here.
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Moderator
Scott Schliebner,
SVP Scientific Affairs,
PRA Health Sciences

Headshot of Dr. Teneasha Washington, PhD, MPH (Assistant Professor, Health Behavior), 2020.

Panelist
Teneasha Washington,
PhD, MPH
Assistant Professor,
University of Alabama at Birmingham
School of Public Health
Department of Public Health

Veer Mehta

Panelist
Veer Mehta,
Founder & CEO,
Halo Health Systems

Jennifer Fields

Panelist
Jennifer Fields, MPH
President,
The Hills Tandem

Postpartum Depression (PPD) & Clinical Trials Part 2

Part 2 of a 2-part series. Medical professionals and patient advocates discuss their experiences with postpartum depression, one of the most common medical complications during and after pregnancy.

Access the webinar recording here.
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Moderator
Kim Edwards,
Senior Manager, Health Communication Services, CISCRP

Dr. Gus Alva

Panelist
Dr. Gus Alva,
Founder & Medical Director,
ATP Clinical Research

Dr. Bassem Maximos

Panelist
Dr. Bassem Maximos,
OB/GYN

Tonya Fulwider

Panelist
Tonya Fulwider,
Associate Director,
Mental Health America
of Ohio

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Presenter
Shalome Sine,
Project Manager,
CISCRP

Postpartum Depression (PPD) & Clinical Trials Part 1

Part 1 of a 2-part series. Medical professionals and patient advocates discuss their experiences with postpartum depression, one of the most common medical complications during and after pregnancy.

Access the webinar here.
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Moderator
Kim Edwards,
Senior Manager, Health Communication Services, CISCRP

Dr. Constance Guille

Panelist
Dr. Constance Guille,
Founder & Director,
Women’s Reproductive Behavioral Health Program, MUSC,
Assoc. Professor,
MUSC

Dr. Jason James

Panelist
Dr. Jason James,
OB/GYN

Heather Dopp

Panelist
Heather Dopp,
Mom Ambassador,
2020 Mom

Building A Clinical Trials Website that Engages Patients & the Public

In this webinar, a speakers from Merck/EMD Serono, TrialScope and CISCRP discuss building a clinical trials website that engages patients and the public.

Robert Janiak, Head of Clinical Trial Transparency, Merck KGaA, Darmstadt, Germany, which operates its healthcare business as EMD Serono in the US and Canada, reviews the launch of a dedicated clinical trials website using the TrialScope Engage™ platform. Jill McNair, Senior Director, Health Communication Services for CISCRP, discusses how CISCRP obtained patient input and how that feedback guided content creation. Naor Chazam, CMO, TrialScope explains how its technology — syncing clinical trial data to the website and generating robust search functionality — helps patients find and enroll in relevant trials, and keep participants informed of study updates and results.

Access the webinar here.

New Patient Engagement Insights from the 2019 CISCRP Perceptions & Insights Study

CISCRP hosted a webinar on October 29, 2019 to share the results of the latest 2019 Perceptions & Insights Study. Over 12,450 people (including 3,600 prior study volunteers) from around the world provided their opinions on clinical research. This latest study reveals significant new insights on patient engagement preferences in particular – such as preferences for learning about clinical trials and services which reduce burden the most, the impact of physician recommendations and involvement in clinical trials, and receptivity to emerging models of clinical trials and new technologies.  Critical differences in sentiments by region, race/ethnicity and other demographic variables will also be explored, along with trends and comparisons to prior studies.   

Topics Discussed:

  • How perceptions of clinical research have changed over the years 
  • Preferred patient engagement initiatives
  • Ways to improve clinical research experiences 

Key Takeaways:

  • Continued acknowledgment of the importance of clinical research, but awareness and trust less among those that have never participated  
  • Healthcare provider recommendations continue to be critical to increasing participation in trials 
  • No one size fits all when it comes to various clinical trial models (traditional vs de-centralized) 
  • Study summary and individual results most wanted post-participation
  • Electronic consent forms viewed as easier to understand compared to paper 

Speakers:

  • Ken Getz, Founder and Board Chair at CISCRP and Deputy Director and Professor at Tufts CSDD Tufts University School of Medicine
  • Annick Anderson, Director of Research Services at CISCRP
  • Jasmine Benger, Senior Project Manager of Research Services at CISCRP

To receive invitations to future CISCRP webinars subscribe to our email list.

To collaborate or host a webinar with CISCRP, please email info@ciscrp.org or call the marketing team at 617-725-2750.

Patient Engagement in Clinical Trials

CISCRP and World Courier collaborated to host a webinar on September 24, 2019. This webinar examines the role of patient engagement in recruitment, retention and patient satisfaction in clinical trials. 

Topics Discussed:

  • Patient Feedback on Clinical Trial Participation
  • What do Patients Want and how can we Support Them?
  • Value of Investing in Patient Engagement
  • What is Direct-to-Patient (DtP) Logistics?
  • DtP Case Study: Collaborative Project Setup
  • What are Organizations Doing Now? What are the Next Steps?

Key Takeaways:

  • There is no ‘one-size fits all’ approach to patient engagement – options are key!
  • Helping advance science and treatment, the ability to access information about their health and condition, and the amount of care and attention they received while enrolled are some of the top ‘likes’ among clinical trial volunteers

Speakers:

  • Jasmine Benger, Senior Project Manager, Research Services, CISCRP
  • Alex Guite, Vice President, Strategy and Services, World Courier
  • Mike Sweeney, Senior Director, Patient Centric Logistics, World Courier

To receive invitations to future CISCRP webinars subscribe to our email list.

To collaborate or host a webinar with CISCRP, please email info@ciscrp.org or call the marketing team at 617-725-2750.

Building Patient-Centric Trials, Putting the Patient First

Archive – This webinar was presented by CISCRP on July 17, 2019.

CISCRP and the Medical Research Network (MRN) are collaborating to host an upcoming webinar, “Building Patient-Centric Trials, Putting the Patient First,” to share important information about the clinical trial process and ways to improve the trial participant experience.

Attendees will hear presentations from expert speakers Annick Anderson, Director of Research Services at CISCRP and Helena Baker, Vice President of Clinical Strategy at MRN. Annick Anderson’s presentation will include data and key takeaways from CISCRP’s Perceptions and Insights study, highlighting patient feedback and reflecting on participant needs in the clinical trial process. Helena Baker will explore patient-centric trial design and solutions available to clinical trial sites to increase efficiencies and ease the patient burden.

The agenda will include:
5-minute Introduction
20-minute Presentation by Annick Anderson
20-minute Presentation by Helena Baker
15-minutes Q&A session (if necessary)

Annick Anderson
Director of Research Services at CISCRP

As the Director of Research Services at CISCRP, Annick Anderson manages the design, implementation, analysis and reporting of a variety of CISCRP research studies. She has more than 15 years of experience conducting primary and secondary research studies in the healthcare, life sciences and consumer goods industries. Prior to CISCRP, she worked at Colgate-Palmolive as a research manager. Annick holds an MBA from the Graduate School of Management at Boston University and a Bachelor of Science degree from Bryant University.

Helena Baker
Vice President of Clinical Strategy at MRN

Helena Baker is the Vice President of Clinical Strategy at Medical Research Network. She has over 34 years’ experience in nursing and healthcare. She previously worked at Healthcare at Home, the Royal London Hospital in Whitechapel, Ferring Pharmaceuticals Ltd and St Bartholomew’s Hospital as well as acting as a healthcare analyst to the pharmaceutical industry. Helena has experience in setting up and running nursing services, working internationally across healthcare sectors and owning and running her own business.