“Episode 61: What you need to know about Patient Registries with Kyle Brown from PatientCrossroads”
by Stacey Richter

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Kyle BrownKyle 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 PatientCrossroads as the CEO and Founder.
01:00 Who hires PatientCrossroads to create these patient registries.
01:40 Why PatientCrossroads is useful for pharmacies, and why pharmaceutical companies want to hire PatientCrossroads 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 PatientCrossroads 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 PatientCrossroads 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 PatientCrossroads approach to stratify data based on quality to get the most accurate information.
12:20 Who uses patient registry data that PatientCrossroads collects.
16:50 “Engage with the key opinion leaders in your research area.”
17:15 How many questions are recommended by PatientCrossroads on a basic medical questionnaire, and how PatientCrossroads 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 PatientCrossroads 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 PatientCrossroads that may benefit your company.
36:10 You can find out more information at PatientCrossroads.com.

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