To Eradicate Thalassaemia and Sickle Cell Anaemia in selected districts of West Benga Ref.No.SSTCRC2640

To Eradicate Thalassaemia and Sickle Cell Anaemia in selected districts of West Bengal: A Holistic Approach through Awareness,analyzing blood components at both protein(Biochemical)and genetic(molecular level) and Prenatal diagnosis Ref.No.SSTCRC2640

1. Introduction

To arrange awareness and screening camps at regular intervals, involving the students of High School, Colleges, Universities and youths for collecting blood samples of the target group so that Thalassaemia / Sickle cell anaemia carriers get informed about their status prior to their marriage.

To arrange awareness and screening of pregnant women, preferably in the first trimester, for carrier status, and for those who test positive, screen their husbands, and enable the at-risk couples to avail services for prenatal diagnosis to prevent the birth of affected child.

To facilitate a prompt referral for genetic counseling and offering prenatal diagnosis at the nearby referral laboratories with molecular testing facilities if the risk status is already known during pre-pregnancy by HPLC screening.

The objectives of the project are focused on raising awareness, conducting screenings, and providing support for individuals at risk of Thalassaemia and sickle cell anemia. These objectives aim to prevent the birth of affected children and offer support to at-risk couples.

2. Research Progress

For fulfillment of our aim to eradicate Thalassaemia and sickle cell anaemia, basic awareness creation among the mass is very important.

Though our Target Group includes people from each and every segment of the society irrespective of caste and creed, our main focus is on the youths of marriageable age who are going to be the parents of tomorrow. Proper awareness and assimilation of the basic idea about the prevention of Thalassaemia through preventing the marriage between two carriers and prenatal diagnosis of the fetus of “at–risk” couple are the two ways to eradicate Thalassaemia and sickle cell anaemia.

In case of this disease, the common proverb, “Prevention is better than cure” is best suitable till date.

At present the total population of only Nadia district of West Bengal as per last Census (2011) is approximately 52 lakhs whereas the total population of West Bengal is 9.13 Cr(approximately)).

So far as the number of beneficiaries is concerned, the total populations of this district is going to be benefitted through our efforts to fight against Thalassaemia and sickle cell anaemia, as not only the patient alone but all the members of the family, relatives of Thalassaemia patients suffering – physically, mentally and financially, be relieved and benefitted in various ways.

Furthermore, it is essential to establish partnerships with national institutions, medical colleges, and governmental and non-governmental organizations involved in the prevention and control of haemoglobinopathies.

These partners can provide technical expertise, resources, and support in implementing the awareness and screening programs.

To ensure the success of these initiatives, it is crucial to involve key stakeholders such as healthcare professionals, educators, community leaders, and local government officials.

The completion of the project could include a discussion of the challenges and potential solutions in implementing these work plan steps.

3. Cooperation Required

-DATA Collection

By Surveys: Using questionnaires or polls to collect information from a large group of people – students of schools, colleges, marriage ceremonies, marriage registrars, doctors of antenatal clinics. This can be done online, by mail, by phone, or in person.

By Interviews: Direct conversations with individuals of previous mentioned groups to gather detailed, in-depth information. They can be structured, semi-structured, or unstructured.

From Focus groups: Guided discussions with groups of people of affected families to gather qualitative data.

-DATA Processing

Data Entry: Capturing information from paper questionnaires or other sources into an electronic format.

Data Editing and Quality Assurance: Reviewing the data for errors, inconsistencies, and missing values to ensure accuracy and maintain quality.

Coding: Assigning numerical or symbolic codes to responses for easier analysis, particularly for open-ended questions.

Classification: Grouping data into meaningful categories (e.g., age, sex, geographic area).

Tabulation: Summarizing the processed data into tables to present key indicators and findings

-Sample Surveys :

Collecting data from a representative sample to make inferences about the entire population.

Project Implementation

The implementation of the project with the objectives we've outlined, which focus on raising awareness and screening for Thalassaemia and sickle cell anaemia, involves several key steps and considerations.

4. Benefits

-Community Awareness and Education: The project will increase community awareness and knowledge about Thalassaemia and sickle-cell anaemia, enabling individuals to make informed decisions regarding screening and family planning.

-Reduced Stigma: The project will work towards reducing the stigma associated with Thalassaemia and sickle-cell anaemia by promoting understanding and acceptance within the community.

-Early Disease Detection: Through screening and prenatal diagnosis, the project will enable early detection of Thalassaemia and sickle-cell anaemia, allowing for timely intervention and appropriate medical management.

-Prevention of Affected Births: By providing support, genetic counselling, and prenatal diagnosis to at-risk couples, the project aims to prevent the birth of affected children.

-Improved Quality of Life: By detecting and preventing Thalassaemia and sickle-cell anaemia, the project will contribute to improved quality of life for individuals and families.

-Reduced Healthcare Costs: The project's focus on prevention and early detection can lead to a reduction in healthcare costs associated with treating Thalassaemia and sickle-cell anaemia.

-Emotional and Social Support: The project will provide emotional and social support to individuals and families affected by Thalassaemia and sickle-cell anaemia, creating a support network where individuals can share experiences, seek guidance, and find solace.

-Policy Changes and Advocacy: The project can also lead to policy changes and advocacy efforts aimed at addressing the issues surrounding Thalassaemia and sickle-cell anaemia, such as improving access to screening and diagnostic services, ensuring affordability of care, and implementing measures to reduce the prevalence of these conditions.

-Capacity Building: The project will contribute to capacity building by training healthcare professionals in Thalassaemia and sickle-cell anaemia screening, diagnosis, and management.

-Healthier Future Generations: The project's goal is to contribute to the creation of healthier future generations by reducing the prevalence of Thalassaemia and sickle-cell anaemia.

-Economic Benefits: The project can also bring about economic benefits by reducing the burden of healthcare costs associated with treating Thalassaemia and sickle-cell anaemia in the long run.

5. Outputs

Potential impact of the project on the community can be significant.

With its focus on awareness, screening, and prevention, the project has the potential to greatly impact the community in West Bengal, the most populous state of India.

One potential impact is the reduction in the prevalence of Thalassaemia and sickle-cell anaemia. Through population, antenatal screening, and prenatal diagnosis, the project aims to identify at-risk couples and provide them with support, genetic counseling, and appropriate interventions to prevent the birth of affected children.

This proactive approach can significantly reduce the number of new affected births in the community, leading to improved health outcomes and a decreased burden on healthcare resources.

Additionally, the project's emphasis on awareness and education can have a lasting impact on the community. By increasing awareness about Thalassaemia and sickle-cell anaemia, the project can help dispel misconceptions, reduce stigma, and promote early detection and timely intervention.

By empowering individuals with knowledge about these conditions, the project can enable them to make informed decisions regarding family planning and reproductive health.

Furthermore, the project's focus on improving access to screening and diagnostic services is vital in ensuring early detection and accurate diagnosis of Thalassaemia and sickle-cell anaemia. This can lead to timely intervention and appropriate management, ultimately improving the quality of life for individuals with these conditions.

Moreover, the project's emphasis on genetic counseling can provide couples with vital information about their risk of having children with Thalassaemia or sickle-cell anaemia, allowing them to make informed decisions about family planning and reproductive choices.

In addition to the individual health benefits, the project also has potential economic benefits for the community. By reducing the prevalence of Thalassaemia and sickle-cell anaemia through proactive screening and prevention, the project can alleviate the financial burden associated with managing these conditions.

This includes costs related to regular blood transfusions, medication, hospitalization, and supportive care.

Furthermore, by preventing the birth of affected children, the project can reduce the long-term healthcare costs associated with managing Thalassaemia and sickle-cell anaemia throughout a person's lifespan.