eConsent Now Available for Cerebral Palsy Patient Registry

January 13, 2021

The Weinberg Family CP Center at Columbia University Irving Medical Center has implemented electronic consenting (eConsent) of patients into the Cerebral Palsy Patient Registry. To better understand how that impacts our patients and what it means for the cerebral palsy community in general, our research coordinator goes into more detail:

What is the Cerebral Palsy Patient Registry?

The WFCPC Cerebral Palsy Patient Registry is a database of over 1200 enrolled patients who have consented to share their medical and contact information. This information allows researchers to expand our understanding of CP and related medical conditions. Upon enrollment into the registry, patients have the choice of allowing researchers to contact them regarding any other study opportunities that they may be eligible for. For more information, click here. 

What is consent?

The informed consent process is the most important part of any clinical research endeavor. It is an ongoing conversation between the research participant and the research team that begins before consent is given. It continues through the end of the participants involvement in the research (National Institutes for Health - NIH).  Informed consent involves providing adequate information about the research to allow for a person to make an informed decision on whether or not they choose to participate. Potential participants should be provided with the information and then given an appropriate amount of time to ask questions and discuss the decision with those close to them. After all, participation in clinical research is a personal decision and that decision should be made by you.

What is eConsenting?

Electronic informed consent (eConsent) refers to any electronic system or process that is used to communicate information about a research study to a participant and to obtain informed consent. The eConsent for the CP Patient Registry is a document that can be accessed and signed on any smart device. A potential participant could then view the document anywhere and on a device they are comfortable using.

Why is it important?

This move to an electronic platform for consenting is coming at a crucial time for the Weinberg Family CP Center. With COVID cases again on the rise and the health of patients as our primary priority, we are finding new and innovative ways to keep time spent in the clinic at a minimum. Furthermore, research has shown that presenting information in an eConsent format actually leads to a better understanding of the project by research participants. The choice to move to eConsenting was an easy one for the research staff at WFCPC. After speaking with their provider, patients who choose to participate in the CP Patient Registry can now review and sign the informed consent documents from the comfort and safety of their own home.

I am so excited to be spearheading the eConsent initiative for the CP Center. My role as a research coordinator is more than just simply facilitating clinical research, but ensuring the safety and privacy of those who choose to participate. Participation in research is a collaboration between investigators and patients with both parties relying on clear communication of the study’s goals and expectations. Remember, the informed consent process is an ongoing conversation between the research team and the participant. The eConsent initiative is only a small part of our constant effort to improve research practices, but we hope that this transition allows the CP community greater access to and engagement with clinical research and the informed consent process.” – Kirsten Carlberg, Research Coordinator

How long will this be available and does it apply to all CP Center research projects?

The CP Patient Registry is the pilot project of the WFCPC eConsent initiative. As new projects are started and current projects come due for IRB renewal, we hope to transition the informed consent process for every study to an eConsent format. Of course, paper versions of the consent will be available to any study participant upon request.

How can I sign up for a research project with eConsent or get more information?

For information regarding opportunities for participating in clinical research, speak to your provider or email the research team at cpresearch@cumc.columbia.edu.

For more reading on eConsent: NCBI

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