Category Archives: Patient Centric

Conversations, Education, Patient Centric, Pediatric, Regulatory

Conducting Inpatient Clinical Research During a Pandemic

23rd Annual Symposium on Clinical & Pharmaceutical Solutions through Analysis (CPSA USA 2020)

Mary Ann Diliberto, The Children’s Hospital of Philadelphia

“We need to find better ways to connect to get work done.” – Mary Ann Diliberto, The Children’s Hospital of Philadelphia

Marry Ann Diliberto describes many of the challenges for clinical research since the onset of the pandemic.  During March 2020, all clinical research stopped, creating difficulties for patients and important studies.  In Mary’s group, they had over 25 studies, managed by 15 staff members – all had to be shut down.  She describes the feeling and thoughts during the onset of the pandemic:  When can we resume research safely and efficiently?  We need to be helping these patients.  We need to be able to see the patients!  After these initial challenging times, Mary and her teams have worked together to implement new protocols and systems, within the reality of the new normal.

Community, Conversations, Featured, Patient Centric, Pediatric, Rare Disease

Patient Centricity: Why Not Use Microsampling Now?

CPSA Everyday Conversation

Matthew Barfield, Roche

“Giving control back to the patient is going the change everything.” – Matthew Barfield, Roche

Matt Barfield discusses his passions that drive him everyday – in life and research.  He looks to help his family, and everyone’s families, while advancing patient centric medicine, alleviating suffering and pain.  Matt also wants to help deliver faster results for drug discovery – where sometimes the drug does not pass phase III.  He understands clinical trials and looks to break through the mistrust of families, changing the paradigm of how we sample.  Smaller samples are less uncomfortable and less painful, especially for children with diseases like Duchenne’s Muscular Dystrophy.  Instead of hiding behind barriers that don’t exist, why not use micro sampling now? 

Communication, Conversations, Featured, Leadership, Patient Centric, Pediatric

Clinical Research in Very Sick Children

Plenary Speaker – 23rd Annual Symposium on Clinical & Pharmaceutical Solutions through Analysis (CPSA USA 2020)

Athena Zuppa, The Children’s Hospital of Philadelphia

“You know by blood volume alone… you can’t approach certain studies.” – Athena Zuppa, The Children’s Hospital of Philadelphia

Athena presents a passionate plenary talk, discussing may of the aspects related to caring for extremely sick children.  Clinical Coordinators and Assistants are faced with real world challenges, Everyday – with each day being different.  Each day, they have to bring their A-game, working in community and unison, applying true empathy and altruism while interacting with the children and their parents.  Of the many complexities discussed, they need to balance decisions based on the clinical and research community – often being faced with several treatment options and what is best for a particular situation.  As well, Athena and her teams are on the frontline for discussions with the parents about their sick child – diagnosis, consent, and progress – a challenging balance of information that needs to be delivered with care.  A dance Everyday, that is not scripted, balancing prioritizations, while making real time decisions, and speaking to the parents of very sick children.