Northgate Public Services

A New Registry for the Indian Association of Clinical Cardiologists (IACC)

Background

Patients across India benefit from a variety of medical interventions aimed at improving their health and quality of life. However, data collected about presentation, treatments and outcomes are often limited to general administrative information and lack the clinical detail and context to capture and measure safety, efficacy and long-term outcomes.

Doctors, researchers and regulators increasingly rely on Real-World Data to fully understand which treatments work best for which patients. This is particularly the case with heart disease, where history has shown that not all drugs perform as expected.

Being able to draw on data from multiple hospitals and doctors, track patients and their outcomes, and monitor the effectiveness of drugs is essential if meaningful conclusions are to be drawn about which treatments provide most benefit and to quickly identify where outcomes are poor.

The Indian Association of Clinical Cardiologists (IACC) and Northgate Public Services (NPS) have entered into an agreement to establish the first clinical cardiology registry for India – a secure, fully managed, cloud-based registry service for the collection, analysis and reporting of activity, treatments and outcomes.

Objectives

The objectives are to create a world-class registry which records and tracks over time the treatments and outcomes of patients with heart disease. Specific objectives of the registry include:

  • Collection and reporting of patient characteristics, risk factors, treatments and outcomes.
  • Support collaboration with other similar international registries.
  • Enable comparative analysis using international benchmarks.
  • Support academic and clinical research into outcomes.
  • Provide information on the safety and performance of pharmaceutical treatments to industry

Benefits

The Indian Clinical Cardiology Registry (ICCR) offers significant benefits to patients, clinicians, hospitals, industry and regulators:

  • Strengthening Real-World evidence on the safety and efficacy of treatments.
  • Evidence for the study of long-term patient outcomes.
  • Better informed prescribing by clinicians.
  • Monitoring adherence to clinical standards.
  • Powering high quality research.
  • Providing independently collected and validated data.
  • Providing insight to prescriber preferences.
  • Providing industry with data to support access to global markets.

What the registry collects

  • Patient and clinician details
  • Investigations and interventions
  • Medications
  • Follow-up activities
  • Outcomes
  • Registry Reporting

Experience tells us that registries are most successful when they include the active participation of industry; they help identify critical data requirements, measures of outcome and can bring national and international context to utilisation of the information.

IACC and NPS are seeking expressions of interest from manufacturers and distributers from within the Indian pharmaceutical industry to contribute to and participate in this important new registry. If your organisation is interested and would like further information, please complete the form below.


What we collect?

IACC Registry Data Collection Summary

Core Data • Primary cause • Patient characteristics and history • Presenting symptoms • Risk factors • Any ICD and pacing devices • Previous ER admissions • Medication compliance • Treating physician • Treating hospital/clinic • Tests  ECG  Blood  Renal

Medications • Diuretics • ACE I • ARB • Beta blocker • Aldosterone blocker • Nitrate • Hydralazine • Digoxin • HCN channel blockers • Anticoagulant • Statin • Calcium blocker • Angiotensin receptor/Neprilysin inhibitor

IACC Registry Reporting (illustrative) • Case volume by clinician • Case volume by hospital/clinic • HF by main cause • HF patient history and characteristics • Incidence of comorbidities • ECG results • Echo/MRI results (LVEF%) • Pattern of prescribed medications  Pharmacologic name  Dose

Type of follow up • DNA • Visit • Tele • Inpatient (1-month F/U) • Lost

Clinical outcome • Death • MI • HF admission • Major bleed • Stroke • Cardiac catheterisation • PCI

Investigations and interventions • CABG • ICD • Permanent pacemaker • Cardiac resynchronisation • F/U echo (LEVF, MR)


Who are we?

About the Indian Association of Clinical Cardiologists (IACC)

The Indian Association of Clinical Cardiologists (IACC) works towards the prevention and treatment of cardiovascular diseases and the eradication of cardiovascular mortality in rural Indian communities. Established in 2008 by Dr Rajesh Rajan, its mission is to promote Clinical Cardiology, Preventive Cardiology and Continuing Medical Education (CME) services across the country in support of primary and secondary disease prevention. The IACC is focused on developing preventive strategies to support poor and needy communities in rural India; identifying risk factors, introducing new screening modalities and reducing the burden of disease. Comprising over 2,600 clinical cardiologists as well as preventive cardiology specialists, the IACC represents the nation's clinical thought leaders in this area who dedicate their working lives towards tackling the leading cause of death and disability in both the developed and developing nations.

About Northgate Public Services (UK) Limited Northgate Public Services (NPS) are experts in the creation and operation of registry services, running national and international registries in the areas of orthopaedics, spinal treatment, vascular surgery and neurology. Our Registry Platform provides a secure and efficient mechanism for the collection and analysis of sensitive patient data and supports the longitudinal linkage of follow-up data to enrich analysis of patient outcomes. Based in the UK, NPS is an NEC Company with offices around the world. NPS offers significant experience in the hosting and management of clinical registries, delivering high value, secure information and data services across multi-stakeholder environments from hospitals and clinicians through to regulators, insurers and industry. NPS operates a number of high -profile registries, and our work has identified faulty implants, as well as poor clinical practices by surgeons and hospitals, allowing corrective actions to be taken. Examples of our work include:

  • The National Joint Registry (NJR), the largest orthopaedic register in the world, now comprising data for over 3 million procedures and; with over 50,000 unique implant items across more than 50 manufacturers. (www.njrcentre.org.uk),
  • The Indian Joint Registry (www.indianjointregistry.in), operated on behalf of the Indian Society of Hip and Knee Surgeons.
  • The UK National Vascular Registry, sponsored by the Royal College of Surgeons and delivered under its Vascular Services Quality Improvement Programme.
  • The EUROSPINE registry, collecting data from multiple European countries.

Contact us

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