P3351The new organizational scheme for research on rare and interesting clinical cases in cardiology
Authors: Sivakova O , Pokrovskaya M S , Efimova I A , Ershova A I , Kharlap M S , Meshkov A N , Myasnikov R P , Metelskaya V A , Drapkina O M 
Published: October 2019

Abstract

Introduction
There is a challenge to study rare and unusual diseases in cardiology. Patients with such cases often concentrate in large scientific medical centers, where implementation of new organizational research approaches may be useful to overcome this challenge.

Purpose
To develop and approbate new organizational scheme to study of rare and interesting clinical cases in cardiology.

Methods
The new organizational scheme for research on rare and interesting clinical cases in cardiology is based on three main interconnected teams: clinical cardiologists, scientific researchers, and biobanking specialists. In 2016 the joint team of experts in these areas developed: 1) criteria for selection of patients with rare and interesting clinical cases, 2) requirements for collection of biomaterial and data, 3) ethical rules, 4) logistics of all processes, 5) organization of teamwork of all participants from different departments, 6) promotion of the project and involvement of all clinicians of the medical scientific center.

Results
The teamwork of cardiologists, scientific researchers and biobanking specialists was organized. Cardiologists are responsible for selection of patients; scientific researchers - for formation and analysis of database; biobanking specialists - for standardization of biospecimens' collection, preparation and safe responsible storage, partly - for database formation. Special training for all participants of the project was conducted. It included issues of selection of patients; the procedure of informed consent signing and information encoding; logistics of interaction of clinical, scientific, and biobank's personnel; proper documentation etc. As a result since the start of the project from June 2016 to January 2019, biomaterial and depersonalized data were collected from 753 patients, including: early (<45 y.o. in men, <50 y.o. in women) development of coronary artery disease – 167, early (<50 y.o.) development of atrial fibrillation – 197, morbid obesity (BMI>40 kg/m2) - 71, primary electric heart diseases - 42, cardiomyopathies - 272, other rare diseases – 96 patients. The project is currently ongoing. This approach allows collecting and preserving valuable biomaterial and data for research in present and future. To date these materials have been already used for several research initiatives such as investigation of hypertrophic and non-compact cardiomyopathies, familial hypercholesterolemia; identification of novel genetic markers of type 2 diabetes and obesity; reports and publications about rare clinical cases.

Conclusion
The integrated teamwork of clinical cardiologists, scientific researchers and biobanking specialists in large scientific medical center gives qualitatively new opportunities: increase of the dynamicity, efficiency, standardization, and as a result, quality of present and future research on rare and interesting clinical cases in cardiology.