Thalassemia Knowledge in Young People of Indonesia

NCT ID: NCT04706585

Last Updated: 2021-05-11

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

1010 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-06-01

Study Completion Date

2021-10-10

Brief Summary

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There is still an ongoing lack of awareness about thalassemia among Indonesians despite high disease prevalence, and this is associated with poor implementation of preventive and promotive measures. Thalassemia experts argue that education and raising awareness about thalassemia must be done from an early age in order to relieve the heavy disease burden of thalassemia, especially in Indonesia as it is geographically located in the thalassemia belt. In spite of this, there has been limited research on public perception towards thalassemia in Indonesia, particularly among young people.

In this study, the researcher will ask young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in an online survey. The survey consists of questions about the participants' demographic information as well as their knowledge, attitude, and practice (KAP) scores towards thalassemia. The study is expected to run from December 2020 to March 2021, with the online survey distributed in January 2021. Data collection will immediately follow, and it will be analyzed using univariate, bivariate, and multivariate analysis using the appropriate statistical tests. The findings gathered from this study will be vital in providing new insight into how the youth sees thalassemia in Indonesia. Such public health information will prove to be important in designing successful thalassemia intervention and education programs for Indonesian youth.

Detailed Description

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Research concept

In this study, the researcher will ask young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in an online survey. The survey consists of questions about the participants' demographic information as well as their knowledge, attitude, and practice (KAP) scores towards thalassemia. The study is expected to run from December 2020 to March 2021, with the online survey distributed in January 2021. Data collection will immediately follow, and it will be analysed using univariate, bivariate, and multivariate analysis using the appropriate statistical tests.

Study design

To evaluate the knowledge, attitude, and practice of Indonesian youth, the study design used will be observational, cross-sectional. An online questionnaire developed by the research team along with several experts is expected to be disseminated to the target population in January 2021. In light of the ongoing pandemic, this is expected to be a nationwide study where most of the work is done via online methods.

Place and period of study

This study will be conducted via online survey due to the ongoing pandemic situation. The study is expected to run from December 2020 to March 2021.

Conditions

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Thalassemia

Study Design

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Observational Model Type

ECOLOGIC_OR_COMMUNITY

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Youth

Young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in our online survey.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Survey participants are based in Indonesia
* Survey participants are between the age of 15-24 and currently attending high school or university level education
* Survey participants include both thalassemia-affected patients and non-patients
* Survey participants have understood and given their consent for the research

Exclusion Criteria

* Currently not studying/living in Indonesia
* Below the age of 15 or above 24
* No consent is given
Minimum Eligible Age

15 Years

Maximum Eligible Age

24 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Fakultas Kedokteran Universitas Indonesia

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Pustika A Wahidiyat, Professor.

Role: PRINCIPAL_INVESTIGATOR

Fakultas Kedokteran Universitas Indonesia

Mikhael Yosia, Dr.

Role: PRINCIPAL_INVESTIGATOR

Fakultas Kedokteran Universitas Indonesia

Edward C Yo

Role: STUDY_DIRECTOR

Fakultas Kedokteran Universitas Indonesia

Muhammad M Wildani

Role: STUDY_CHAIR

Fakultas Kedokteran Universitas Indonesia

Visabella R Triatmono

Role: STUDY_CHAIR

Fakultas Kedokteran Universitas Indonesia

Locations

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Fakultas Kedokteran Universitas Indonesia - Rumah Sakit Cipto Mangunkusumo

Jakarta Pusat, DKI Jakarta, Indonesia

Site Status

Countries

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Indonesia

Central Contacts

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Edward C Yo

Role: CONTACT

+628973420875

Mikhael Yosia, Dr.

Role: CONTACT

+6281378778784

Facility Contacts

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Mikhael Yosia, Dr.

Role: primary

081378778784

References

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Marengo-Rowe AJ. The thalassemias and related disorders. Proc (Bayl Univ Med Cent). 2007 Jan;20(1):27-31. doi: 10.1080/08998280.2007.11928230.

Reference Type BACKGROUND
PMID: 17256039 (View on PubMed)

Husna N, Sanka I, Arif AA, Putri C, Leonard E, Handayani NSN. Prevalence and distribution of thalassemia trait screening. J Med Sci. 2017 Jul;49(3):106-13.

Reference Type BACKGROUND

Wahidiyat PA, Sari TT, Rahmartani LD, Setianingsih I, Iskandar SD, Pratanata AM, et al. An insight into Indonesian current thalassaemia care and challenges. ISBT Sci Ser. 2020;15(3):334-41.

Reference Type BACKGROUND

Wahidiyat I, Wahidiyat PA. Genetic problems at present and their challenges in the future: thalassemia as a model. Paediatr Indones. 2006;46(5):189-94.

Reference Type BACKGROUND

Other Identifiers

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MHS001

Identifier Type: -

Identifier Source: org_study_id

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