Sep 19, 2015
Kyle is the founder
and CEO of PatientCrossroads, a provider of patient registry
solutions to the rare and neglected disease
community. PatientCrossroads collects patient provided
medical history and testing results in order to gain insight into
disease progression and to recruit patients for inclusion in
clinical studies and trials. Kyle is a respected authority on
rare disease patient registries and is a frequent speaker at
research conferences educating the non-profit and research
community on the need for universally accessible, de-identified
patient information. Kyle's passion is to change the
economics of patient provided information from closed, proprietary
access, to universally available self-funding programs that
accelerate disease research.
00:00 Kyle gives an overview of Patient CrossRoads as the CEO and
Founder.
01:00 Who hires Patient CrossRoads to create these patient
registries.
01:40 Why Patient CrossRoads is useful for pharmacies, and why
pharmaceutical companies want to hire Patient CrossRoads to create
patient registries.
02:00 “No one is going to want to invest hundreds of millions of
dollars of research, if they can’t quantify it.”
04:00 Kyle gives an example of how Patient CrossRoads partners with
advocacy programs in order to collect information from
patients.
05:50 “Patients know a lot more about disease than we give them
credit for.”
07:18 How Patient CrossRoads reviews the patient-provided data and
follows up with patients to clarify any information that is
unclear.
08:30 “Asking the patient to provide that data is one thing,
reviewing it is another.”
09:15 The Patient CrossRoads approach to stratify data based on
quality to get the most accurate information.
12:20 Who uses patient registry data that Patient CrossRoads
collects.
16:50 “Engage with the key opinion leaders in your research
area.”
17:15 How many questions are recommended by Patient CrossRoads on a
basic medical questionnaire, and how Patient CrossRoads uses this
information to collect more specific and useful medical data.
20:45 Kyle gives an example of how a patient registry can answer a
researcher’s question, even if the registry was not specifically
aimed towards the researcher’s disease focus.
23:10 How a patient registry is different than a data-mining
system.
24:08 “Being able to recruit into multiple research studies without
fragmenting the patient population is a huge advantage.”
25:00 Why it’s not wise to move data once you have it, and why
“linking up” is a loaded term that isn’t always wise.
26:50 How Patient CrossRoads employs an “Umbrella Registry” that
employs a multi-tenant enabled infrastructure so that the data is
always in one place.
31:15 Kyle reveals some news about Patient CrossRoads that may
benefit your company.
36:10 You can find out more information at
PatientCrossRoads.com.