Meeting Archive:
Patient Registries: What They Are and How to Start One

Meeting Description:
Have you heard of a patient or natural history registry but have no idea what it was?  Interested in starting a registry for your patient population but not sure where to start?
We will cover these topics and more in an educational webinar on May 1. NORD’s Research Programs Manager Suzanne Rossov will give an overview on what registries are, the various types of registries, and the benefits of participating in them. Then, Alexandra Kruse from the Platelet Disorder Support Association will talk about her organization’s experience with starting a registry as well as the challenges they faced. 
This is webinar will be perfect for patients, caregivers, member organizations, and researchers who want to learn more about registries.
Date: Tue, May 1, 2018
Time: 02:00 PM EDT
Duration: 1 hour
Host(s): National Organization for Rare Disorders
 Presenter Information

Suzanne Rossov moved from Jamaica to Boston, MA where she studied biology at the University of Massachusetts. Prior to working at the National Organization for Rare Disorders (NORD), Sue worked at Partners HealthCare where she managed telehealth projects designed to improve care and communication between patients and clinicians. Her passion for improved healthcare as well as her belief in the power of the patient voice continues through her work at NORD where she supports the natural history study initiative on NORD’s IAMRARETM registry platform. She believes that patient centered outcomes research is a key factor to finding treatments and cures, especially in the rare disease community. 

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Alexandra Kruse is the Research Coordinator for the Platelet Disorder Support Association, overseeing research and advocacy initiatives for patients with Immune Thrombocytopenia (ITP). She created and manages the ITP Natural History Study Patient Registry in collaboration with NORD and support from the U.S. Food and Drug Administration. She holds certificates in Registry Studies, Biomedical Investigators Informational Privacy and Security, Good Clinical Practice HIPAA, and Advanced Methods in Clinical Effectiveness Research. A promoter of patient-powered research, Alexandra reshaped PDSA’s grant guidelines with guidance from the Patient-Centered Outcomes Research Institute, encouraging patient involvement in promising ITP research and oversees the PDSA Research Program. 

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As NORD’s Director of Education Programs, Sika Dunyoh manages initiatives designed for healthcare professionals and patients, including Continuing Medical Education (CME) programs. Sika has more than 10 years of experience in creating and managing programs for scientific societies and in developing engaging educational resources for scientific, technical and medical (STM) professionals and researchers. 
She is also the founder of Shine Light on Rare Diseases, which is an initiative she established in memory of her sister who passed away from a rare disease. The goal of Shine Light on Rare Diseases is to highlight the prevalence of rare diseases and to help people with rare diseases receive faster diagnoses to help save and improve the quality and length of their lives.