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Human Research Protections Clubhouse:

Empowering Collaboration and Excellence in Human Research Protection

PRIM&R 2023 Luncheon

hrp clubhouse logo

Our mission is to empower and unite professionals by providing education, networking, and collaborative dialogue, enhancing ethical conduct and regulatory compliance. Our vision is to be recognized globally as a leader in fostering a community where human research is conducted with the utmost ethics, integrity, and compliance.

The Human Research Protections Clubhouse (HRPCH) is where professionals in human research protection converge to foster a culture of collaboration, learning, and innovation. Through active engagement in webinars, discussions, and leadership roles, our members share knowledge and promote ethical research practices. This vibrant community is built on mutual respect, continuous growth, and a commitment to the highest standards in human research protection.

Your engagement, contributions, and leadership are essential to shaping the future of ethical research. Together, we can make a significant impact on the lives of research participants and the advancement of scientific discovery. Become part of a vibrant community of professionals dedicated to fostering a culture of collaboration, learning, and innovation in human research protection.  Simply register for any future webinar and indicate you want to be added to the mailing list or write to hrpclubhouse@downstate.edu

Thank you for your commitment to promoting ethical research practices and safeguarding the well-being of research participants. We look forward to seeing you!

 

 

Event Date:  February 22, 2023

Session Overview:

Community and patient partners are often included in research projects as co-investigators, recruiters, data collectors and team members responsible for obtaining informed consent. These individuals require training in human research protections, but standards programs may not always be the best fit.

At this session you will learn about two unique (and free) research ethics training programs – CIRTification and Research Ethics For All – developed specifically for (and with) community partners.

Learning Objectives:

After attending the sessions, attendees should be able to:

  1. Describe the unique training needs of community research partners (individuals with no previous research background who will be engaged in recruitment, informed consent, data collection/analysis and/or dissemination of research findings).
  2. Discuss some of the unique ethical dilemmas that community research partners face in doing their work.
  3. Identify and implement resources for training community research partners.

Speakers:

Emily E. Anderson, PhD, MPH, Professor of Bioethics, Loyola University Chicago, Stritch School of Medicine

Emily developed CIRTification: Community Involvement in Research Training (available free online in English, Spanish, and Haitian Creole) after working for several years on community engaged research projects and studying research ethics during her PhD program. Her research and scholarship focuses on, among other things, developing accessible research ethics education and thinking about ways to engage public perspectives in discussions and decisions about what makes research ethical. She has served on 5 different IRB over the past 20 years.

Katherine McDonald, PhD, FAAIDD, Senior Associate Dean of Research & Administration, Syracuse University, Falk College of Sport and Human Dynamics

In collaboration with Ariel Schwartz at the University of New Hampshire and a national group of stakeholders, Katie developed Research Ethics for All, disability-accessible research ethics education for community research partners with developmental disabilities. Katie uses socio-ecological theory and community-engaged research to promote the inclusion of adults with disabilities in research as research partners and research participants to advance new knowledge to promote social and health equity. Katie has served on 3 different IRBs and is Chair of the IRB at Syracuse University.

Moderators:

  • Sherry Cheng
  • Heather Miller, PhD, CIP
  • Satish Veerla, MS, PharmD

Recording Duration:  1 hour of insightful exchange and discussion.

Register here to watch on demand. 

Passcode: 9=6*eDaR 

 

Event Date:  January 10, 2024

Session Overview: In this HRP Clubhouse event, we held engaging discussions around human research protections, IRB responsibilities, Institutional responsibilities, and special interests.  

Lead Moderator:

  • Joel Seah, BSc

Co-Moderators:

  • Hallie Kassan, MS, CIP
  • Heather Miller, PhD, CIP
  • Kevin Nellis, MS, MT(ASCP), CIP
  • Satish Veerla, MS, PharmD 

Thank you for your commitment to promoting ethical research practices and safeguarding the well-being of research participants. We look forward to your presence at this important event.

Register here to watch it on demand.

Passcode: @?2OT=r. 

PRIM&R 2023 Clubhouse Luncheon

 

The HRP Clubhouse Board of Advisors hosted our exclusive Lunch Networking Session at the National PRIM&R Conference onTuesday, December 5th from 11:30 AM to 1:00 PM.  This was a remarkable chance to connect and network with fellow professionals in person.   

Thank you to all who were able to attend.

Event Date:  November 28, 2023

The Human Research Protection Clubhouse held an engaging and insightful Zoom webinar featuring the esteemed Harry C.S. Wingfield, the author of “Human Subjects Research: An Insider’s View.” This event was tailored for IRB and HRPP professionals, students, investigators, and our valued members of the patient community, who champion ethical research practices.

Why You Should Review the Recording:

  • Connect with a community of peers dedicated to ethical research practices.
  • Gain valuable insights from Harry’s vast wealth of knowledge from an illustrious career spanning pivotal roles within the research ethics realm, including Student Researcher, Research Participant, Community and National Advocate, Activist, Clinical Regulatory Coordinator, IRB Technical Writer, Senior IRB Staff, and Retiree.
  • Participate in a vital conversation about the evolution of the research process and the research enterprise.
  • Take part in an open dialogue on enhancing community advisory boards, prioritizing impactful research, and optimizing resources.
  • Voice your perspectives, network with peers and empower each other while contributing to the collective mission of advancing human research protections.

Featured Speaker:

Moderators:

  • Heather Miller, PhD, CIP (she/her)
  • Satish Veerla, MS, PharmD (he/him)

Recording Duration:  1 hour of insightful exchange and discussion.

Post Session Resources:

Important note about the recording:  If you have not already registered or if you are using a new device, Zoom may prompt registration for the event.  Once registered, enter the passcode: o0y34+r8 

Event Date:  October 31, 2023

Session Overview:

During this engaging and informative session, we explored the impact of gendered language on the participation of LGBTQIA+ individuals in research. Gendered language appears in the regulations, particularly in Subpart B.  Gendered language is also common in participant-facing materials, such as consent forms. This session illustrated how such language both introduces ambiguity in how regulations are applied, as well as negatively impacting the experience of LGBTQIA+ research participants.  

Thank you for celebrating Halloween with us, to those who helped contribute to the success of this event, and for your commitment to promoting ethical research practices and safeguarding the well-being of research participants.

Key Discussion Points:
• The need for inclusive language in regulations and participant-facing materials
• The real impact of gendered language on the lived experiences of LGBTQIA+ research participants

Featured Panelists:
• Nyssa Towsley, MS, CIP
(they/she)
• Ronnie Lichtman, CNM, LM, PhD, FACNM
(she/her)
• Michelle Burgett-Moreno, MS
(she/her)
• Kevin Nellis, BS, MS, MT(ASCP), CIP
(he/him)

Moderators:
• Heather Miller, PhD, CIP
(she/her)
• Satish Veerla, MS, PharmD
(he/him)

Post Session Resources:

Important note about the recording:  If you have not already registered or if you are using a new device, Zoom may prompt registration for the event.  Once registered, enter the passcode: 60&!Le+i

Note:  The plan is to update these documents after the survey research is completed.

 

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The following members graciously serve on the HRP CH Advisory Board:

Cecilia Brooke Cholka, PhD, CIP

Human Research QA & Education Manager, Human Research Protection Operations

Weill Cornell Medicine  |  New York Presbyterian
Office of Research Integrity, Human Research Compliance 
New York, NY 

Fanny Ennever, PhD

University Research Compliance Officer

City University New York

New York, New York

Hallie Kassan, MS, CIP

Houston, Texas

Heather Miller, PhD, CIP

Policy Administrator

Human Research Protection Program

University of Southern California

Los Angeles, California

Joel Seah, BSc

PhD Candidate 

Centre for Biomedical Ethics, Yong Loo Lin School of Medicine 

National University of Singapore

Singapore

Kevin L. Nellis, MS, MT(ASCP), CIP

Executive Director, Human Research Protections and Quality Assurance

SUNY Downstate Health Sciences University

Brooklyn, New York

Melissa A. Epstein, PhD, MBE, CIP

Executive Director, Human Research Protection and Compliance

Weill Cornell Medicine | New York Presbyterian

New York, New York

Satish Veerla, MS, PharmD

Sr. Regulatory Analyst

Human Research Protection Program Office

UT Southwestern Medical Center 

Dallas, Texas

Sherry Cheng

Protocol Review and Monitoring Committee Coordinator

NYU Langone Health

New York, New York

 

All works of the Human Research Protection Clubhouse website and products have been conducted with due diligence.  However, the information shared about or within the club and on this website is for educational and informational purposes only and is made available to users without cost.  The information and resources shall not be understood or construed as legal, financial, tax, medical, health or any other professional advice.  The opinion of the presenters, moderators, or guests is that of their own and does not represent their institutions.  

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