Rare disease Registry essay
In part three of five articles by Siren Interactive, Eileen O’Brien discusses how important patient registries are for the acceleration of orphan drugs and the awareness of rare diseases, as well as looking into the challenges of funding and duplication. Eileen also speaks with PatientCrossroads and PatientsLikeMe to find out their thoughts on this issue.
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At a very basic level a registry is a systematic collection of standardized data on a group of patients. “There are different types of registries used based on needs, ” says Kyle Brown, Founder &, CEO of PatientCrossroads. “The chart below outlines the major types of registries and associated spectrums of the amount of data you can collect versus cost versus quality of data.”
Patient Opt-In: Also known as 'contact registries' where users register themselves on a website and provide minimal information, which is then used to reach out to patients interested in clinical trials, etc.
Patient Opt-In, Verified: Where users opt-in, complete detailed medical histories and provide confirmatory testing results. A central 'curator' then reviews the records and tags each record for completeness, confirmed diagnosis, required follow-up, etc.
"Pharmaceutical companies need registries to help guide investment decisions."
Physician Entered: Essentially the same as Patient Opt-In, Verified, but the physicians do all of the data entry by interviewing patients or reviewing patient completed medical questionnaires.
Product Registry: Typically used by pharmaceutical companies to track which patients are on treatment for clinical trials, studies or post-market surveillance requirements.
Figure 1: Table showing the different types of patient registries. Source: Patient Crossroads
The type of information included in a typical registry can include demographic information, diagnosis, treatments, symptoms, path to diagnosis, family history, genetic testing, natural history and quality of life data.
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