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1. What is a disease registry?
2.
What is the Diabetes in Children and Adolescents Registry (DiCARE)?
3. Why Diabetes in Children and
Adolescents Registry (DiCARE)?
4. What are the purpose of
(DiCARE)?
5. Who should participate in
(DiCARE)?
6. How is (DiCARE) organised?
7. Who reports to the (DiCARE)?
8. How can I participate in the
(DiCARE)?
9. What are the benefits of
participating in the (DiCARE)?
10. What about confidentiality?
1.
What is a disease registry?
Disease Registry or surveillance is defined as an ongoing,
systematic collection, analysis and interpretation of disease
specific data, and timely dissemination of these consolidated and
processed information essential to the planning, implementation and
evaluation of clinical and public health practice, to contributors
to the surveillance and other interested persons.
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2. What is
DiCARE?
The Diabetes in Children and Adolescents Registry (DiCARE) is a
service supported by the Ministry of Health (MOH) to collect
information about diabetes disease among children and adolescents in
Malaysia. The information can be used to estimate the incidence of
diabetes disease according to the types, to evaluate its risk
factors and treatment in the country. Such information is useful for
assisting the MOH, non-governmental organizations, private providers
and industry in planning and evaluation, leading to diabetes disease
prevention and control.
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3. Why Diabetes in Children and Adolescents Registry (DiCARE)?
There are several important issues when applying the rigorous
standards and protocols from clinical trials into real-life
practice. We should ask ourselves:
Are the population and the patients groups in Malaysia similar to
those being investigated in the clinical trails?
Are our hospitals following the guidelines set out by the expert
committees?
Are we seeing the same results and benefits of implementing
evidence-based strategies?-
Which strategy the best value in terms of cost-effectiveness for
the Ministry?
Furthermore, much of what we understand about risk and likelihood of
diabetes mellitus and indeed its incidence and prevalence are
derived from Western data. There is now an increasing awareness of
ethnic variations and risk, socio-cultural and socio-economic
influences as well as geographical variations. The risk prediction
of diabetes mellitus is also unclear and may be different in the
patients.
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4. What is the purpose of DiCARE?
The objectives of the DiCARE are to:
Determine the number and the time trend of diabetes mellitus in
the children and adolescents in Malaysia.
Determine the socio demographic profiles of these patients to
better identify the high risk group in our Malaysian population.
Determine the number, evaluate and monitor the outcomes of
intervention in terms of metabolic control and complications.
Stimulate and facilitate research using this registry.
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5. Who should
participate in the DiCARE?
a. Source data producers: All pediatricians and physicians in
Malaysia who provide diabetes disease diagnostic services or who
care for diabetic patients such as public health practitioner,
health care provider, health service planner and decision maker,
researchers, and voluntarily report data to the DiCARE.
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6. How
is DiCARE organized?
The DiCARE is sponsored by the Ministry of Health and supported by
several of its organizations:
Paediatric and Adult Medicine Departments , MOH.
Clinical Research Centre, Kuala Lumpur Hospital.
Hospital Universiti Kebangsaan Malaysia.
Universiti Malaya Medical Centre.
A Governance Board will be established to oversee the operations of
the DiCARE. The MOH, Universities, professional bodies, NGOs and
private healthcare providers will be present on this committee to
ensure that the DiCARE stays focused on its objectives, continuing
relevance and justification.
The Governance Board for DiCARE:
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7.
Who reports to the DiCARE?
For the DiCARE to succeed, ideally all doctors who have anything to
do with diabetes disease ought to report to the DiCARE. We urge you
to do your part for your community, and help DiCARE obtain the
information so crucial in promoting effective diabetes disease
prevention and control.
The DiCARE receives data on diabetes disease from 2 main sources:
All paediatricians and physicians in Malaysia who provide diabetes
disease diagnostic services or who care for diabetes disease
patients, and voluntarily report data to the DiCARE.
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8. How can I
participate in the DiCARE?
For the DiCARE to succeed, ideally all doctors who have anything to
do with diabetes disease ought to report to the DiCARE. We urge you
to do your part for your community, and help DiCARE obtain the
information so crucial in promoting effective diabetes disease
prevention and control.
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9.
What are the benefits of participating in DiCARE?
Apart from doing your bit for your community, here are some other
benefits to being a reporter:
Access to the database and therefore study the trend of diabetes
disease among children and adolescents.
Online data query and statistics of your institution anytime,
anywhere.
Online comparison of your institution data versus the country data
anytime, anywhere.
Data security and privacy are in compliance with regulatory
requirement.
Invitation to all functions organized by the DiCARE.
Acknowledgement in all publications of the DiCARE.
Complementary personal copy of all DiCARE publications.
Free listing in the DiCAREs web site.
Tap into a network of like-minded people from diverse professional
disciplines and backgrounds.
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10. What about confidentiality?
Current legislation allows doctors to release their patients data
to persons demonstrating a need, which is essential to public health
and safety. The DiCARE meets this requirement. The DiCARE has also
developed strict policies and procedures to maintain confidentiality
in disclosure of data.
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