The Brugada Brigade

Cardiovascular disorders are one of the leading causes of death globally. They represent 32% of all global deaths , approximately 5% of the world's population is affected by Collective Rare Cardiovascular Disease. 80% of these rare disorders are genetic. 

Patients with such rare diseases suffer from diagnosdelayslay due to the lack of knowledge and very little awareness among the masses and Healthcare workers.

BRUGADA SYNDROME is one such rare disease that we talked about is a rare, life-threatening disease that can be inherited ( via Autosomal Dominant Pattern ). It predisposes patients to fatal arrhythmias. It affects the Electrical signals passing through the heart via the Right Bundle Branch Block  This occurs due to mutation in the Sodium Channels of the myocardium due to mutation in the SCN5A gene which codes for the statement and there is the movement of mutation of this SCN5A gene in about 20-30% of the patients with this syndrome

In some patients, Brugada Syndrome has no clinical expression.  In some, could lead to Syncope or cardiac death due to Polymorphic Ventricular Tachycardia and Ventricular Fibrillation About 10% of patients also develop Atrial Fibrillation ( more common in pediatric patients ). Atrial muscle involvement can manifest as sinus node dysfunction and can present as the initial clinical sign of

The prevalence of Brugada Syndrome is approximately 5-50 per 10,000 people. Brugada syndrome is approximately 8 to 10 times more common in males than females. This gender difference, however, is not found in pediatric patients. This has been hypothesized to be due to higher testosterone levels after puberty and different proportions of ionic currents based on sex. Brugada syndrome is also more prevalent in those who are of Southeast Asian descent. The mean affected age is 41 years old. Brugada syndrome accounts for 4-12% of all sudden cardiac deaths.

The prevalence of Brugada syndrome in the pediatricp opulation is low (0.0098%) compared with the

adult population (0.14–0.7%). Nevertheless, in recent years, there has been growing evidence in the literature of earlier onset of the disease.

Diagnosis should be considered in patients with unexplained cardiac arrest or syncope or a family history of such in the absence of structural heart disease.

Otherwise, A 12-lead electrocardiogram is significant to both diagnose and decide management corruption for Brugada syndrome.

The specific ECG pattern observed in Brugada syndrome is known as BRUGADA TYPE ECG PATTERN (BTEP). The ECG patterns are, however, transient and can be induced by FEVER, drugs, electrolyte disturbance,ces or mechanical compression of the right ventricular outflow tracker-causing BTEP has been attributed to complex reasons: age (young > old), and gender (male > female) Fever-induced ed BTEP is common. Such patients may be predisposed to malignant arrhythmias during the febrile episodes.

Close and regular follow-up of these patients is mandatory, since the risk of malignant arrhythmias may be high.

Follow-up will also help in the risk stratification and appropriate management of these patients as and when they become symptomatic due to fever or consumption of alcohol/sodium channel blockers.

Specific ECG pattern observed in Brugada syndrome is known as BRUGADA TYPE ECG PATTERN (BTEP). 

The diagnostic criteria of BrS consist of 2 parts: (1) detection of the typical ECG abnormality and (2) clinical characteristics. Coved-type ST-segment elevation and negative T wave in the right precordial leads with or without a drug challenge test in the 12-lead ECG is the hallmark of diagnosis. In conjunction with the ECG abnormality, 1 of the following criteria is necessary: 

(1) a history of VT/VF, 

(2) a family history of SCD, 

(3) a family history of coved-type ECG, 

(4) agonal respiration during sleep, or 

(5) inducibility of VT/VF during electrophysiological study.

Electrocardiography is a vital indispensable part for diagnosis of Brugada Syndrome. To address this we have a novel solution. WYHF  endeavors to bridge the urban and rural healthcare divide . Aims to train healthcare workers, to identify early cardiovascular risk factors and the typical ECG features seen in Brugada Syndrome. This will be integrated by installation of Electrocardiogram (ECG) machines in Primary Healthcare Centers in rural and peri-urban belts along with capacity building. 

WYHF - India  has set up a project known as Project Cardiogram. Project Cardiogram has the vision of ensuring access to affordable cardiovascular health for all individuals living in rural India. The purpose of the project is multifold starting from baseline assessment of the current healthcare system, training of healthcare workers to identify early cardiovascular risk factors and prevent delayed management, deployment of Digital ECG machines at Primary Health centers, organizing community-based screening cam, ps and finally integrating it with digitized Tele-Medicine. 

The project is implemented in a phased manner: starting with baseline needs assessment and research. Including collecting data on the current status, equipment, staff (trained or untrained), patient flow, etc; Sorting out the PHCs based on the requirements (The ones which do not have ECG machines are prioritized); Contacting Medical Officers (MOs) and District Health Officers (DHOs) for establishing a channel of communication for further assistance. This would be followed up by training the Healthcare workers regarding the identification and interpretation of a normal and abnormal ECG along with training for identification of risk factors and sympaboutng to Brugada Syndrome in the pediatric population. The volunteers are also provided with a standardized training. 

Next, the team works towards the deployment of ECG machines at the PHCs followed by organizing community levelwellevel wells risk risking camps for data collection, research, intervention (if necessary), a necessary brugada awareness. 

Finally, the Digital ECG Machines across all PHCs would be Integrated with telemedicine units which woulrelayedaying from an associated common platform. 

This system is what the nominee teras the "Hub & Spoke Model". A telemedicine unit (TMU) is established at all the THC which is responsible for interpreting the ECG within 5 minutes and guiding the MO for the next steps for the patient. The TMU helps in responding to the digital ECGs with basic patient history for OPD patients, screening ca,mps, and acute emergencies.

Our solution serves the vast pediatric, adolescent, and young adult populations spread across the crevices of the community. Most of their families are oblivious to the possibility of a CVD happening to a young child. As a result of which, this population is the least screened/tested for rare diseases like Brugada syndrome. Our solution not just ameliorates the quality of living but successfully sensitizes their families and educates them on the essentials of cardiovascular screening. This would increase outreach and enable widespread advocacy and awareness of the Brugada syndrome and its prevalence in the South-Asian pediatric and young adult population. 

The target population includes pediatric patients, adolescents, and young athletes. The rarity of this disease in the pediatric population can be surmised by the fact that the largest retrospective study in children conducted across 13 tertiary hospitals in three countries dating back 15 years (since the discovery of BrS) yielded only 30 patients. In large studies of asymptomatic children from Japan n, the BrS ECG pattern was found in 0.01%–0.0 2%, suggesting that BrS may exist in children but becomes clinically unmasked with increasing age. Indeed, 23% of asymptomatic children who were first-degree relatives of patients with BrS demonstrated abnormal ECG on ajmaline challenge after puberty despite having negative testing before puberty. The strong male predominance seen in adults is not reflected in pediatric studies, where there is at most a mild male predominance. The incidence of life-threatening arrhythmias in children with BrS is around 10%. 

The syndrome being rare makes its diagnosis a challenge to an average practitioneCreatinging awareness about the same will bring about a positive change and help with the missed diagnosis in certain cases. The diagnosis takes a toll on the mental health of the affected families too. When awareness regarding the diagnosis and management is at a grassroots level it will help not only in managing the patient but also their families. The ECG being such a simple but vital part in the diagnosis plays an unmistakable role here. The solution provided by our team focuses on just that. 

The World youth heart federation (WYHF) is an International NGO representing youth around the world. The federation provides a dynamic platform to individuals below the age of 35 years to work towards improving the cardiovascular health of society. We strongly promote inter-sectoral collaboration and believe that solidarity is the keystone that will help us achieve our goals. WYHF envisions a world in which all the young members of society join hands for providing better cardiovascular health to the world. It is the only youth-led NGO in India that focuses exclusively on cardiovascular health. Other youth NGOs in India usually conduct general health screening camps and donation drives, which are not specific to cardiovascular health. WYHF on the other hand centers its activity around the general population and provides preventative and diagnostic solutions for cardiovascular health, especially in rural areas. Through project cardiogram, WYHFadoptss a unique approach to bridging the demand-supply gap by collaborating with ECG manufacturers and supplying portable digital ECGs to government PHCs. These ECGs are easy to use, and results can be remotely interpreted by senior doctors at Tertiary Care centers, thus facilitating telemedicine in rural areas. WYHF fuels its work through exhaustive research and on-ground baseline assessments to provide specific need-based solutions to each PHC of the district. It also undertakes research projects to assess the diagnostic accuracy of the digital ECG provided by newer manufacturers. WYHF conducts cardiac screening camps, and trains MOs and nurses to use ECG, interpret it, perform CPR, and learn basic management of MI. This approach enables WYHF to provide more specific and comprehensive cardiovascular care solutions to the community. 

We are a youth-powered organization dedicated to making an impact in the field of cardiovascular health. Our organization comprises 5 specialized committees - Health Education, Advocacy, Research, Technology, and Entrepreneurship, each designed to work toward challenges in its respective field. Apart from this, our core team comprises 4 regional directors and their support teams to address specific regional challenges. WYHF is a firm advocate of improving cardiovascular health across the world in all sections of society. 

- To tackle the market barrier. 

With the grant provided to us, we want to establish a Telemedicine unit that unites the physicians at the primary point-of-care clinics, having a large sum of pediatrics and young adults consulting in the outpatient units. We aim to make this unit sustain itself. The cycle should be put into action at least 2-3 times a year.

Globally, the market size of cardiovascular health was valued at $170.6 billion in 2019 and is expected to grow at a CAGR of 5.8% from 2020 to 2027. The growth is due to factors such as the rising prevalence of cardiovascular diseases, increasing healthcare expenditure, and the launch of new therapeutic drugs and devices. According to a report by the Indian Council of Medical Research (ICMR), the net worth of the cardiovascular disease market in India was estimated at approximately USD 9.22 billion in 2018 and is expected to reach USD 15.14 billion

by 2023, growing at a CAGR of 10.4%. The burden of cardiovascular disease in India is significant, with an estimated prevalence of around 6-10% in rural areas and 12-15% in urban areas, according to a report by the World Health Organization (WHO). The disease also accounts for a large share of Disability-Adjusted Life Years (DALYs) lost in the country, estimated at around 24% of the total burden of disease. The economic burden of cardiovascular disease on the government is also considerable, with a report by the National Health Accounts estimating that it accounted for 5.2% of total government health expenditure in 2017-18. The cost of hospitalization due to cardiovascular disease is also high, with an average cost of around INR 57,000 per hospitalization, as reported by the National Health Profile 2019. According to a report by the Ministry of Youth Affairs and Sports, there are around 300 million young people in India between the ages of 10 and 24, which represents a significant potential workforce for the non-profit sector. The exact market size of youth participation in NGOs is not readily available, but it is estimated that around 35% of the Indian population is below the age of 25, indicating a significant youth market for NGOs to tap into.

I am Dr. Eesha Shah, I am a fresh medical graduate. I have been working extensively in Public Health since my very first year in Medical school. I am from Gujarat itself. I am very passionate about cardiovascular health and global surgery and finding impactful innovative ways to decreased the burden of the diseases by strengthening the healthcare grass root level up. After being a volunteer for multiple awareness campaign and working with various organisations, being an international trainer and held in leadership position, as the president for WYHF and a medical professional i am well equipped and in constant communication with the local Primary health centers, to understand their needs better and be able to deliver it while empowering the youth and medical students along the effort.