Haemoglobin Disorders
Information

Global epidemiology of haemoglobin disorders and derived service indicators

Introduction
Inherited haemoglobin disorders (sickle-cell disorders and thalassaemias) were originally characteristic of the tropics and subtropics but are now common worldwide due to migration.1–4 Since they can be controlled cost-effectively by programmes that integrate treatment with carrier detection and genetic counselling, WHO has recommended global development of these services.5,6 However, service development can be unexpectedly challenging, because it requires inclusion of genetic approaches in health systems.

The diversity and heterogeneous distribution of haemoglobin disorders make it necessary to develop strategies at the country level. To assist policy-makers, we use haemoglobin disorders as an example to show how genetic epidemiological data can be interpreted in terms of administrative boundaries (and/or ethnic group) and practical service indicators. The work was initiated for WHO7,8 and further developed in the United Kingdom,9,10 where it is used for local needs-assessment.11 Global data are available at: www.chime.ucl.ac.uk/work-areas/cab/.

Genetic terminology can be impenetrable to non-specialists. In this paper, we use terms proposed for more general use by the Professional Education for Genetic Assessment and Screening (PEGASUS) Genetic Education Programme of the United Kingdom National Screening Committee:11 haemoglobin disorders include sickle-cell disorders and thalassaemias; haemoglobin gene variants are haemoglobinopathies; significant variants are gene variants that can cause a serious disorder; carriers are healthy heterozygotes; people with combinations of gene variants are homozygotes and compound heterozygotes; and α thalassaemia major is haemoglobin Barts hydrops fetalis.
Source

Interviews
We plan to do einterviews with MBBS doctors to understand 4 things
1) Tests or questions you ask in first few meetings
2) What it means in medical terms
3) What it means in non medical terms
4) What should the patient or care takers do

We might interview Aurvedic doctors, homeopathic doctors, Yoga teachers on this health issue

Video links
Haemoglobin disorders

Hemoglobin and Hemoglobinopathies
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