The Rare Roundup

Winter 2021 | Vol. 1

The official Newsletter of Rare Disease Research, LLC

"Success is the sum of small efforts repeated day in and day out."

-Robert Collier

We Are Moving!

It has been a long wait for us! Please hang in there; we ARE going to move by the end of February, according to Dr. Phan's recent communications with the construction crew. As is the nature of the construction business, deadlines sometimes are not really deadlines - they are just lines that may go on forever! With inspections occurring at many steps in the process, delays are inevitable! Despite that fact, it's so exciting for us to see our purple and white RDR sign on the building every time we pass it on the freeway. We hope that the Certificate of Occupancy will be ours soon! 


Clinical Research Trends And Insights Ror 2021

Watch out for these new or continuing trends in 2021 as 2020 had thrown us a giant curveball and caused many changes in regulatory and operational procedures:

  • Increase in number of remote visits and remote monitoring → increase ethical and privacy concerns, e-consent, e-regulatory, etc.
  • Increase in number of gene therapy trials
  • Increase in more permanent solutions regarding technology and decentralized trials
  • Increased need for clinical research professionals with specialized talent to respond to greater complexity of clinical research
  • Increased/Renewed focus on patient advocacy and diversity: From sponsors to regulators, we will see a concerted effort to engage the clinical trial workforce and clinical trial participants to provide opportunities and greater access for our underrepresented communities.

Reference: WCG (2020). Clinical Research Trends & Insights for 2021. [White paper]. 


Welcoming New Staff

RDR is very excited to welcome pediatric nurse practitioner Lindsay Pare to our team! Lindsay came to us from CHOA where she was a charge nurse for the GI/Endocrine floor since 2015. Lindsay loves working with children and their families. She completed her undergraduate study at Clemson University and earned her Master’s through the University of Alabama, Birmingham. We learned during the interview process that Lindsay loves to travel and is also a lover of food (like so many of us!). We can’t wait to get Lindsay acquainted with clinical research and be part of the RARE family!