Patient Perspectives on Clinical Trial Participation

Biogen

Click on the resources listed below to download the full versions of Biogen’s materials.

Biogen’s Commitment to Build Trust and Diversity in Clinical Trials [VIDEO]

Biogen Trial Link

The TALLY Clinical Trial

The Hidden Face of MS

Drugviu

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Pandemic Response Network Flyer: English

Red de Respuesta a una Pandemia: Español

Peer Plus

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Peer Plus: Mission and Capabilities

Latino Union of Chicago

Click on the resources listed below to download the full Latino Union of Chicago Annual Report.

Latino Union Annual Report 2018

Advocate Aurora Health

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Dominantly Inherited Alzheimer’s Network Trial Unit

Dominantly Inherited Alzheimer’s Disease Brochure
Expanded Registry Flyer (English)

Enfermedad de Alzheimer de herencia dominante
Expanded Registry Flyer (Spanish)

Clarity AD Clinical Study Information

Forgetting the Little Things
Concerned About Memory Loss?

US POINTER Volunteer Study Brochure

Allergy & Asthma Network

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Allergy & Asthma Network Virtual Overview 2020

Institute for Population and Precision Health (IPPH)

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IPPH Research Programs Overview Presentation

Einstein Healthcare Network

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Moss Rehabilitation Research Institute

TREND Community

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Community Voice Report July 2020: COVID-19 Positive

Community Voice Report August 2020: Pericarditis

Fox Chase Cancer Center - Temple Health

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Be the Breakthrough: Understanding Clinical Trials

Allergy & Asthma Network

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Allergy & Asthma Network Virtual Overview 2020

Otsuka

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PsychU Brochure

NephU Brochure

PsychU App Flyer

PsychU Patient & Caregiver Collection Flyer

Collaborating for Improved ADPKD Management: Considerations for the Healthcare Team

Site List

Lung Cancer Initiative of North Carolina

Click on the resources listed below to view the full versions of LCI’s materials.

Lung Cancer Risk Assessment Handout

PRA Health Sciences

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wearestronger2gether.com

Duke Health

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Visit Discover Duke Research on Facebook

Download the handout below in English or Spanish

North Carolina Clinical Research

Visit North Carolina Clinical Research’s website

Mike Wenger, Global Head of Patient Engagement, Informa Pharma Intelligence

Mike Wenger is Global head of Patient Engagement at Informa Pharma Intelligence. As both a patient and software developer, Mike is passionate about patient access to clinical trials. He is spearheading Citeline Connect, the only end-to-end platform for clinical trial education, recruitment and enrollment, enabling sponsors to accelerate study startup and boost engagement. Mike was named one of the 2020 PM360 ELITE 100 in the Patient Advocates category and a 2020 Force for Change Illuminator. He also was a finalist in the Patient Advocate of the Year category in the 2020 Medigy HITMC Awards.

Wesley Michael, President, Rare Patient Voice

Wes Michael founded Rare Patient Voice in 2013 to give patients and caregivers with rare diseases the opportunity to voice their opinions in research studies. Rare Patient Voice has now conducted thousands of studies and rewarded patients and caregivers with over $8 million for their participation. Many have been recruited in person by Wes and his team at patient events like fund-raising walks and patient conferences, and through a referral program with patient advocacy and support groups. Rare Patient Voice now covers non-rare as well as rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand.

Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes was recently inducted into the DTC National Hall of Fame, honoring individuals who have demonstrated extraordinary achievement in the advancement of direct-to-consumer marketing.

Steve Jones, President, EU-IPFF

Steve Jones, is President of EU-IPFF, the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation and part of the Citeline Connect referral collective. EU-IPFF is dedicated to making clinical trials work better for patients in partnership with pharma and regulators in UK and Europe. Steve also is chair of trustees of the UK patient organization Action for Pulmonary Fibrosis and a council member for the European Lung Foundation. He also sits on the steering committees of four major non-pharma clinical trials funded by the UK’s National Institute of Health Research. Steve himself is a pulmonary fibrosis patient and had a lung transplant five years ago.

Ashley Smock

Ashley Smock is a woman living with ovarian cancer. She took part in the Rare Patient Voice/Informa survey on patients and clinical trial participation in 2021.

Sarah Nechama Frisch

Sarah Nechama Frisch is a woman living with narcolepsy with cataplexy. She took part in the Rare Patient Voice/Informa survey on patients and clinical trial participation in 2021.

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Contact Info

© 2023 CISCRP | All Rights Reserved

Biogen

Click on the resources listed below to download the full versions of Biogen’s materials.

Drugviu

Click on the resources listed below to download the full versions of Drugviu’s materials.

Peer Plus

Click on the resources listed below to download the full versions of these materials.

Latino Union of Chicago

Click on the resources listed below to download the full Latino Union of Chicago Annual Report.

Advocate Aurora Health

Click on the resources listed below to download the full versions of Advocate’s materials.

Allergy & Asthma Network

Click on the resources listed below to download the full versions of the Allergy & Asthma Network’s materials.

Institute for Population and Precision Health (IPPH)

Click on the resources listed below to download the full versions of IPPH’s materials.

Einstein Healthcare Network

Click on the resources listed below to learn more about Einsteing Healthcare Network’s resources.

TREND Community

Click on the resources listed below to download the full versions of the TREND Community’s materials.

Fox Chase Cancer Center - Temple Health

Click on the resources listed below to download the full versions of the Fox Chase Cancer Center’s materials.

Allergy & Asthma Network

Click on the resources listed below to download the full versions of the Allergy & Asthma Network’s materials.

Otsuka

Click on the resources listed below to download the full materials from Otsuka.

Lung Cancer Initiative of North Carolina

PRA Health Sciences

Click on the resources listed below to view the full versions of PRA’s materials.

Duke Health

Click on the resources listed below to view the full versions of Duke’s materials.

North Carolina Clinical Research

Visit North Carolina Clinical Research’s website

Mike Wenger, Global Head of Patient Engagement, Informa Pharma Intelligence

Wesley Michael, President, Rare Patient Voice

Steve Jones, President, EU-IPFF

Ashley Smock

Sarah Nechama Frisch