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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Patient Journeys and Insights Across Oncology and Rare Diseases

Towson, MD/Palo Alto, CA – April 19, 2021

Rare Patient Voice (RPV), the leader in patient-focused recruiting, and Clinakos, the market leader in linked patient level data and insights, are pleased to announce an industry-first collaboration designed to combine the patient voice with actual patient data. This innovative partnership brings together Rare Patient Voice’s patient community and Clinakos’ cloud platform which consolidates a patient’s complete medical and behavioral profile through aggregating their medication, lab, genomic, device, EMR and wearable data to create complete and linkable Patient360 profiles.

Now, insights from patient interviews and surveys can be combined with each patient’s medical and behavioral profile to provide a complete and accurate picture of the patient journey. Bringing Clinakos’ intelligent connected cloud platform with medically smart AI technology to RPV’s panel of oncology and rare disease patients creates value for both patients and life sciences companies.

Wes Michael, President of Rare Patient Voice said, “We are excited to be part of this next step into sharing the complete patient experience with industry. Including patient insights along with patient data provides a robust picture which has not been available until now!”

“We are pleased to partner with Rare Patient Voice on this important work,” said Inder Jaggi, Founder & CEO of Clinakos. “Patient Insights, Real World Data (RWD) and Real World Evidence (RWE) for oncology and rare diseases have been historically hard to obtain. Linking the full medical record with patient insights will enable more accurate decisions for clinical development, medical affairs, HEOR and commercial teams.”

ABOUT RARE PATIENT VOICE
Rare Patient Voice, LLC provides patients and caregivers an opportunity to voice their opinions through surveys and interviews to improve medical products and services. RPV has over 100,000 patients across 563 different conditions. https://rarepatientvoice.com

ABOUT CLINAKOS
Clinakos’ unique platform leverages vast amounts of disconnected health data to power patient care. It curates historical and real time healthcare data from hundreds of primary sources, links it together for each patient and generates meaningful insights using cognitive technology. Clinakos provides linked patient records across 90% EMRs, 99% Pharmacies, 90% Labs with coverage of over 90% of the US population. https://www.clinakos.com

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