News & Updates

Mid-South CDRN a part of 11 Announced Collaborative Research Groups by PCORnet

Mid-South CDRN Co-PI Tim Carey speaks on the importance of Collaborative Research Groups for patients and clinicians.

The Mid-South CDRN will co-lead 3 of the 11 announced PCORnet Collaborative Research Groups (CRGs).  The CRGs bring together experts from multiple networks to generate high-priority research questions that will focus on providing patient-centered outcomes.  The CRGs will be dedicated to engaging advocates, partner networks, and funders to answer these questions using the PCORnet infrastructure.  To focus on specific research topics, some the CRGs have developed Research Interest Groups (RIGs) to investigate sub-categories of their research area. The CRGs will develop data elements that are relevant to the group’s focus area, as well as advance the PCORnet mission of advancing the science of patient-centered outcomes and pragmatic research through innovative methods.  Mid-South will lead the Diabetes and Obesity, Kidney Health, and Hospital Medicine CRGs.  For more on the PCORnet CRG launch click here.

Mid-South participates in the ADAPTABLE Kick-off Meeting

The Mid-South CDRN participated in the ADAPTABLE study kick-off meeting in Washington, DC on October 28th.  The meeting was attended by patients, clinicians, and research staff, which allowed for a very interactive and collaborative kick-off meeting.  The meeting included a panel discussion with the patient partners, as well as a panel discussion with the Principal Investigators and Co-Principal Investigators.  Recruitment for the study has seen an increase over the last several weeks, with efforts largely being led by Mid-South.  ADAPTABLE has 446 participants enrolled to date.

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Mid-South CDRN PI, Dr. Russell Rothman, presents at ADAPTABLE study kick-off meeting.

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ADAPTABLE patients, clinicians, and research team pose for a group photo

Neely Williams, Patient Investigator, Pens Op-Ed for The Tennessean

 

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The Rev. Neely Williams wrote an op-ed, published by The Tennessean, calling for a louder patient voice in clinical research.

“The harsh reality is this: If we are from a community or population that is consistently underrepresented in the clinical research process, we are expected to simply make do, to accept the knowledge gaps around our unique situation and hope for the best outcomes.” 

In the article, she urges communities to build bridges of trust with the medical community and accept PCORnet’s invitation to make clinical research a two-way street.

Click HERE to read the article.

Mid-South CDRN Stakeholder Engagement Team Member, Neely Williams Featured as Patient Advocate in PCORnet Video

Neely Williams, a member of our Stakeholder Engagement Team, shares why she was a natural fit for the PCORnet Bariatric Surgery Study.  As a patient and a health advocate, she recognizes that clinical research outcomes are for all stakeholders. From clinicians, to the patients they serve.  “Everybody wins, if we are able to develop a better process,” she shared as her hope for this project.

 

 

 

Mid-South CDRN represented at the Building Trustworthiness in PCORnet conference

Dr. Consuelo Wilkens and Dr. Cuffe, along with stakeholders Neely Williams and Bob Stevens, recently attended the Building Trustworthiness in PCORnet conference in Washington, D.C. on March 28-29th. In clinical research, we often ask: why don’t they trust us? This puts the burden on the patient/participant. Instead, the question is: how are we trustworthy?  The focus of this workshop was to explore this question. PCORnet hosted a dynamic workshop to begin a critical dialogue about ethics, trust, and engagement, not just for PCORnet, but clinical research overall. Presenters catalyzed a broad dialogue about these issues by listening deeply to communities (the experts in this topic) and examining examples from inside and outside of health. The purpose of the sessions was to foster meaningful discussion through provocative, brief presentations, and the participant discussion.

Click HERE to read more about the meeting.

 

Dr. Wilkens and Dr. Cuffe along with stakeholders Neely Williams and Bob Stevens.
Henrietta Lack's grandson was in attendance for the important conversations on building trustworthiness. Left to right: Neely Williams, David Lacks, Dr. Cuffe, Bob Williams, and Dr. Wilkens.
Henrietta Lack’s grandson was in attendance for the important conversations on building trustworthiness.
Left to right: Neely Williams, David Lacks, Dr. Cuffe, Bob Williams, and Dr. Wilkens.

PCORI – Cycle 3 2015 Funding Announcements

On October 12, 2015, PCORI posted 10 PCORI Funding Announcements (PFAs) under Cycle 3 2015, which invite applications for studies under their five national priorities for research, four targeted projects and Pragmatic Clinical Studies. Click the links below to find out more about each PFA, key dates for submitting Letters of Intent (LOI), applications, dates for our applicant town halls, and other helpful resources.

Group Health Research Institute/Neely Williams Co-PI Approved for $4.5 Million for Obesity Study

Neely Williams Co-Principle Investigator (Co-PI) with Group Health Research Institute in partnership with the Mid-South CDRN has been approved for a three-year $4.5 million funding award by the Patient-Centered Outcomes Research Institute (PCORI) to study Obesity. The study aims to produce results faster and more efficiently by using PCORnet, the National Patient-Centered Clinical Research Network. Reverend Williams is from Nashville and has been involved as an advocated for patients and their perspectives in research through her work as the Patient Investigator with the Mid-South CDRN. Her work has allowed her to have an impact on a national level, including her role as Co-Principle investigator on this project. Please click here to learn more about PCORI’s obesity observational research initiatives.

If you have any questions feel free to contact us via email.