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World Orphan Drug Congress USA 2024
23 - 25 April
Boston Convention and Exhibition Center,
Boston, MA
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Patient Data Seminars
Patient Data Seminar, Tuesday 23 April 2024
Patient Data Seminar
14:59
Chair's Remarks
Jason Colquitt,
Chief Executive Officer,
Across Healthcare
Patient Data Seminar
15:00
Walking side by side: Co-designing patient registries
Pamela Gavin,
Executive Vice President,
National Organization for Rare Disorders (NORD)
Patient Data Seminar
15:20
Revolutionizing care: Unlocking the value of patient data
Huong Huynh,
Director of Regulatory Science,
Critical Path Institute
Patient Data Seminar
15:20
Unlocking the value of patient data (draft)
Huong Huynh,
Director of Regulatory Science,
Critical Path Institute
Patient Data Seminar
15:40
Clinical and caregiver data collection in Rett Syndrome: A successful registry launch
Melissa Kennedy,
Chief Executive Officer,
International Rett Syndrome Foundation
Patient Data Seminar
16:00
The value of peer collaborative data collection in a rare disease with no specific symptoms
Leslie Edwin,
President,
Cushing's Support & Research Foundation
Gretchen Jordan,
Associate Director,
Cushing's Support & Research Foundation
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Pre-conference Day - World Orphan Drug Congress USA 2024 16:00, Patient Data Seminar
The value of peer collaborative data collection in a rare disease with no specific symptoms
Leslie Edwin,
President,
Cushing's Support & Research Foundation
Gretchen Jordan,
Associate Director,
Cushing's Support & Research Foundation
Patient Data Seminar
16:20
Coordination of Rare Diseases at Sanford (CoRDS): Centralized international patient registry for all rare diseases
Benjamin Forred,
Director of Translational Research and the CoRDS Registry,
Sanford Health
Patient Data Seminar
16:40
Co-Producing data for daily care and regulatory submissions
Jason Colquitt,
Chief Executive Officer,
Across Healthcare
last published: 25/Apr/24 19:55
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