Expert Insights

Expert Insights

Rare Disease Institute Spotlight on Katherine Pryor

Rare Disease Institute Spotlight on Katherine Pryor
23 August 2020

Our Rare Disease Institute launched earlier this year, and in keeping with our #SynteractStrong values, we’ve been pleased to have several participants across Synteract become certified.

Katherine Pryor, Senior Project Manager Synteract We asked our own Katherine Pryor, Senior Project Manager what working in rare means to her, and why she chose rare to focus on. She explains:

I have been in clinical research for approximately 18 years. During this time, I have been fortunate enough to work in a variety of roles, on a wide spectrum of indications, and in every trial phase.

Everything from a hypertension registry study that looked at the treatment of hypertensive urgencies and emergencies in the local ED to protocol writing and CSR development for a study in hereditary angioedema (HAE). All studies are important and have real life implications for the participants, but none have affected me as much as working on rare disease trials.

What makes rare disease trials stick with me like no other type of trial are the personal stories and the direct impact on people who have few to no treatments available. The people living with rare diseases are incredibly strong and brave, going years with no diagnosis or several misdiagnoses. They keep going, they keep living the best they can.

During early start-up planning for trial testing a treatment for Pachyonychia congenita (PC), the team was brainstorming ways to count movement for participants. This was a critical endpoint in the study. Most of us thought, “Ah, this is a no brainer! We can provide each participant a FitBit.” At that point, the sponsor representative we were working with piped up and said that traditional pedometers wouldn’t work because at times the calluses are so painful that people with PC cannot walk and literally have to crawl to get from point A to B.

I have also found that working in rare disease has introduced me to some of the most dedicated and passionate people I have met in my career. Many advocates are parents who were thrust into the world of advocacy because their child was born with a rare condition. The doctors cannot give them answers because they often have never even seen the combination of symptoms that are presented. The parents are motivated by the love they feel for their children so stop at nothing to get the answers which often leads them to connecting with others and forming advocacy teams. An important aspect of working in rare is understanding this connection and being ready and willing to work with the parents and patients more closely than in any other type of trial.

Working in rare disease also crosses into all therapeutic areas from dermatology to cardiology to neurology. There are rare diseases that affect every system within the body with some affecting multiple systems simultaneously. There is always something to learn, something new to discover which makes working in rare both rewarding and highly educational.

I highly encourage everyone to participate in one rare disease trial or get involved with an advocacy group. Doing this helps advance understanding and knowledge of these conditions plus it helps to remind us of the importance of the work we do for all study participants.

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