Thalassaemia

Project Title :ATABS (Awareness of Thalassemia disease  Among Bangladeshi Students)

Thalassemia Awareness Campaign in Bangladesh

Aim of this Project : To  Develop awareness of Thalassaemia disease  among university students in Bangladesh and offer Premarital Screening

Working in partnership with BioTED and   GenX Health.

Background: Thalassaemia is a potentially life-threatening yet preventable inherited hemoglobin disorder. Understanding local socio-cultural context and level of public awareness about thalassaemia is pivotal for selecting effective prevention strategies. In a previous study we assessed knowledge and perceptions about thalassaemia among college students in Bangladesh. That study has identified critical knowledge gaps and societal misperceptions about thalassaemia.

A better understanding of these aspects will be pivotal for disseminating thalassaemia related information and brining routine thalassemia screening into practice.

Rationale: Findings from a  past study has generated baseline data that would contribute to developing effective intervention strategies in Bangladesh and other countries with a comparable socio-cultural setting. [Hossain, M.S., Hasan, M.M., Raheem, E. et al. Lack of knowledge and misperceptions about  thalassaemia among college students in Bangladesh: a cross-sectional baseline study. Orphanet J Rare Dis 15, 54 (2020). https://doi.org/10.1186/s13023-020-1323-y ]

The  study among college students and university students are expected to be no different in terms of knowledge, attitude and practice. Therefore, it is imperative that we do awareness campaign across the universities of Bangladesh to encourage premarital screening which is the most effective strategy to prevent thalassemia.

Project Details

 

thalassemia

Background  Thalassaemia is a potentially life-threatening yet preventable inherited hemoglobin disorder. Understanding local socio-cultural context and level of public awareness about thalassaemia is pivotal for selecting effective prevention strategies. In a previous study we assessed knowledge and perceptions about thalassaemia among college students in Bangladesh. That study has identified critical knowledge gaps and societal misperceptions about thalassaemia.

A better understanding of these aspects will be pivotal for disseminating thalassaemia related information and brining routine thalassemia screening into practice.

Rationale: Findings from a  past study has generated baseline data that would contribute to developing effective intervention strategies in Bangladesh and other countries with a comparable socio-cultural setting. [Hossain, M.S., Hasan, M.M., Raheem, E. et al. Lack of knowledge and misperceptions about  thalassaemia among college students in Bangladesh: a cross-sectional baseline study. Orphanet J Rare Dis 15, 54 (2020). https://doi.org/10.1186/s13023-020-1323-y ]

The  study among college students and university students are expected to be no different in terms of knowledge, attitude and practice. Therefore, it is imperative that we do awareness campaign across the universities of Bangladesh to encourage premarital screening which is the most effective strategy to prevent thalassemia.

 

 What are we trying to achieve ? 

  1. Developing awareness among young generation . We are aiming to Screen at least 2,000 or more students across the universities in Bangladesh in first phase .
  2. Provide dedicated counselling of identified Thalassemia career by qualified personnel.

Consolidated result will be published in a peer reviewed journal.

Who are our target population ?

Target Universities: we will try to enroll similar number of students (average 100) from each university. So that, statistical comparison can be carried out. Students will also fill up a validated questionnaire regarding knowledge, attitude and practice about thalassemia as part of the awareness campaign

    1. Dhaka University
    2. Jahangirnagar University
    3. Jagannath University, Dhaka
    4. Chittagong University
    5. Rajshahi University
    6. Khulna University
    7.Shahjalal University of Science and Technology, Sylhet
    8. Kushtia Islamic University
    9. Mymensingh Agricultural University
    10. Sher-e-Bangla Agricultural University, Gazipur
    11. Jessore University of Science & Technology
    12. Barisal University, Barisal
    13. Noakhali University of Science & Technology, Noakhali
    14. Mawlana Bhashani University of Science & Technology, Tangail
    15. Cumilla University
    16. Bangabandhu Sheikh Mujibur Rahman University of Science and Technology, Gopalganj
    17. Bangladesh University of Engineering & Technology (BUET)
    18. North South University,Dhaka
    19. BRAC University, Dhaka
    20. East West University, Dhaka

    Data Protection and Privacy Notice

    This screening system is being conducted by Base Care Foundation.

    All responses and personal details provided during registration for the services under this project, run by the Base Care Foundation, are managed in accordance with the General Data Protection Regulation (GDPR). Data anonymity and confidentiality will be ensured at every stage of the service provision. All responses are securely stored in an encrypted format within the Base Care Foundation.

    All information will be exclusively checked, summarised, and reported by certified professionals, including physicians, psychiatrists, and psychologists. No personally identifiable information will be shared with any third party.

    Service users have the right to:

    • Object to specific uses of their information.

    • Withdraw from participation at any stage without providing any reason.

    • Request termination of access to their information.

    • Request permanent deletion of their responses and personal data, if they wish.

    In addition to the details provided above, participants are welcome to enquire about any further use of their information.

    At any stage, users may also raise concerns related to:

    • Data integrity and confidentiality,

    • Protection or storage of data, or

    • Revocation of consent.

    For such matters, please contact us directly at:
    📧 basecarefoundation@gmail.com

    For the sake of clarity: Without prejudice to the above, the system reserves the right to send non-marketing messages. These may include communications related to clinical monitoring or patient feedback questionnaires as required by the authorised team of the Base Care Foundation.