Mission statement from the first global severe asthma registry

The International Severe Asthma Registry (ISAR; http://isaregistgries.org/) came into existence back in 2017. Its goal was ambitious: to become the first real-life, adult, severe asthma registry in the world.

“That goal has now been realised with the invaluable help and support of national/regional severe asthma registries, and of our ISAR Study Group of international asthma experts,” says Prof David Price (Director of both the Observational Pragmatic Research Institute (OPRI), which analyses the data, and Optimum Patient Care, a co-founder of ISAR along with AstraZeneca).

ISAR currently contains data from 8366 patients with severe asthma from 19 registries and 31 countries around the world and continues to grow. “ISAR, has taken us all on a bit of an adventure, into previously unexplored severe asthma waters,” continues Prof Price, “and after more than 2 years on this journey, now is the time to stand back, take stock and examine our achievements”. The recently published ISAR mission statement does just that, summarising what ISAR is, its goals and objectives and the six key pillars that underpin it. ISAR’s strength comes from the collection of anonymised, patient-level, standardised and high-quality data, combined with data collection/database expertise and organisational, clinical, academic and publications oversight. “By acting as a global severe asthma data custodian, ISAR has the potential to describe the severe asthma population in its entirety and in partnership with OPRI is committed to conducting robust, clinically relevant research to improve diagnosis, disease stratification and even to identify new treatment targets,” explains Prof Price. “Of course, as with any journey there are challenges ahead. With so much data at our disposal, it’s important to harness that power to provide meaningful clinical oversight, ask the right questions and provide answers that will improve the lives of our severe asthma patients. ISAR has the potential to provide those answers not only to physicians, but also to patients, guideline developers and payers.”  

Optimum Patient Care Ltd (OPC), specialises in delivering medical research and services to improve diagnosis, treatment and care of chronic diseases within family care and specialist practices, and has provided clinical services and supported real-life research for over 14 years. It drives a vision for inclusion of real-life data into all aspects of medical research while informing the translation of research into daily clinical practice via new technologies and clinical services. Over the past decade, OPC has proven its expertise in both health care service provision, and the collection of data for ethically approved research purposes, globally. In the UK, OPC has established one of the largest family medicine databases, called the Optimum Patient Care Research Database (OPCRD) which holds nearly seven million anonymized electronic health records from patients in primary care. Globally OPC has coordinated the delivery of several large-scale international registries including the iHARP database (https://iharp.org/ (link is external)) and the International Severe Asthma Registry (ISAR) (http://isaregistries.org/ (link is external)). More information can be found out about Optimum Patient Care at https://optimumpatientcare.org/

The Observational & Pragmatic Research Institute (OPRI; https://opri.sg/) founded by Prof David Price, is an independent research organisation with over 12 years of leadership and global experience in successful delivery of retrospective database studies, prospective pragmatic clinical trials and international patient registries. With a special focus on uncontrolled and severe asthma, OPRI has conducted several systematic, investigative and experimental (SIE) studies to aid the discovery and development of novel and innovative inhaler devices, precision medicine therapies and risk prediction tools such as biomarkers. This research has contributed to a growing body of real-world evidence illustrating the unmet needs, effectiveness, safety and value of biopharmaceutical and biotechnology in real-world patient populations. OPRI (with its partner OPC) offers exclusive data sharing agreements to one of the largest primary care databases in the world, the Optimum Patient Care Research Database (OPCRD), which allows access to a network of over 700 GP practices and 8.8 million patients in the UK for bespoke data collection. OPRI also has a new and growing network of GP practices in Australia to translate research from study idea to clinical change.

AstraZeneca (LSE/STO/NYSE: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialisation of prescription medicines, primarily for the treatment of diseases in three therapy areas: Oncology; Cardiovascular, Renal and Metabolism; and Respiratory. AstraZeneca operates in over 100 countries, and its innovative medicines are used by millions of patients worldwide. Please visit astrazeneca.com and follow the Company on Twitter @AstraZeneca.

Press release to highlight the publication of ‘The ISAR Study Group, International Severe Asthma Registry: Mission Statement. CHEST 2019 Dec 12. pii: S0012-3692(19)34287-4. doi: 10.1016/j.chest.2019.10.051’