Disease-specific registries
Why?
Registries are well established tools to prospectively monitor treatment benefits and risks over time, through the collection of natural history data, and aid the development of new therapeutics and/or diagnostics. They can be used to gather information on disease progression and patient subgroups, facilitate patient recruitment into clinical trials, and generate real world evidence on the safety and cost effectiveness of new therapeutics.
Who will benefit?
Health care professionals, health payors, and patients via real-world evidence of clinical outcomes that arise from various clinical management and therapeutic approaches.
How?
Through our partnership with longstanding research affiliates, Optimum Patient Care (OPC) and Respiratory Effectiveness Group (REG), and our elaborate network of research collaborators worldwide. Our global research collaboration span over 20 countries, such as UK, Spain, Poland, South Korea, Ireland, Singapore, Malta, Italy, Sweden, Australia, Iceland, Canada, USA, Greece, Bulgaria, Netherlands, Denmark, Japan, Germany, France, Norway, Estonia and Finland. Our success in global collaboration has been a vital asset to standardized disease registries at an international level.
What we offer
With our extensive background in research and international patient registries and global network of experts, we offer a wide range of services from generating proposals, providing scientific research review, feasibility assessment via access to available international registries, study design, protocol generation, guidance on ethical approval, and patient recruitment.
Delphi Method
In order to determine the most appropriate and feasible data fields to be collected at a clinical setting for a registry, we offer support for and recommend conducting a Delphi method. This is an iterative and anonymized method for collecting group consensus on a standard set of variables. This critical step allows for data interoperability.
Electronic Data Capture System (EDC)
EDC systems specifically designed for longitudinal real-life data collection are an integral aspect of disease registries. At OPRI, we have experience setting up and working with an array of EDC platforms, such as REDCap, OpenClinica and CISIV, equipped for data import/export, data validations at point-of-entry and data protection.
Our Supported International Registries:
A global registry of severe asthma patients was built in 2017 by enabling the exchange of severe asthma data across more than 14 countries. Procurement of data was made possible by facilitating the induction of new national registries in countries, such as Canada and Japan, as well as coordinate the data extractions from existing registries, such as the UK Severe Asthma Registry, and Australian Severe Asthma We-based Database (SAWD).
An international initiative conducted in 7 countries including; UK, Italy, Spain, Netherlands, France, Norway, Sweden and Australia implementing Helping Asthma in Real-life Patients (iHARP) among 5000 patients with moderate–severe asthma who are managed in a real-life setting to help optimise asthma management and improve patient outcomes..
A multi-centre global prospective registry to examine the clinical validity and utility of the concept to provide an evaluation of “COPD control”, specifically in terms of predicting outcomes and guiding on-going COPD management (and/or whether the measure may benefit from further refinement).