Prevention and Control of Thalassaemia in Southern China, Guangxi Province by Ping Chen of Guangxi Medical University

1. 1st Pan-Asia Conference on Haemoglobinopathies
Prevention and control of
thalassaemia in Southern China
Guangxi Province
Ping Chen
Guangxi Medical University
g y

2. Thalassemias are the most common inherited blood
disorder in Southern China

3. Guangxi Zhuang Autonomous Region &
G i Zh A t R i
Guangdong province
Guangxi Province Guangdong Province
Population 50 million 80 million
Area 240,100 179,800
Ethnic group 37 53
Han: 61.46% 98.6%
Minority groups: 38.54% 1.4%
Annual births 720, 000 1 million

4. The Ca e rate for t a asse a
e Carrier ate o thalassemia
Carrier rate for Carrier rate for Carrier rate for
province -thalassemia(%) -thalassemia(%) Hb E(%)
Guangxi 14.95 5.65 0.009
Guangdong 8.53 2.54 NA
16
14
12
10
Guangxi
8 Guangdong
G d
Hongkong
6
Taiwan
4
2
0
alpha-thalassemia beta-halassemia

5. Estimated number of patients
st ated u be o pat e ts
province Annual births Hydrop foetalis -thalassemia major
Guangxi 720,000/yr
720 000/yr 4050/yr 574/yr
Guangdong 1,000,000/yr 7276/yr 645/yr

6. Prevention and control program of
p g
Thalassemia in Southern China (Since 1983)
• 1960s: thalassemia research began.
• 1983 -thalassemia genotyping and prenatal diagnosis were
1983: th l i t i d t l di i
established and have been performed.
• 1987: Prenatal diagnosis for -thalassemia started.
• 1998: iron chelation and stem cell transplantation for patients
p p
with -thalassemia major.
• 2004: separate fetal DNA in maternal plasma for - and

-thalassemia prenatal diagnosis.
• 2007: Preimplantation genetic diagnosis for thalassemia.
thalassemia

7. Support f
S t from th Ministry of Health of China &
the Mi i t f H lth f Chi
Government of Guangxi Province
The Ministry of Health of China and Guangxi government signed
agreement for prevention and control of thalassemia
tf ti d t l f th l i
March 11, 2010

8. Prevention and control program for thalassemia
in Guangxi province (2010)
• Enhancing health education
• Setting up more centers for screening and diagnosis of
thalassemia
• Training medical doctors, nurses, technicians and health
workers
• Provision of free screening to premarital couples
• Free prenatal diagnosis

9. Prevention and control program for thalassemia
in Guangdong province (2010)
• “Maternal and Children s Safety and Health Project
Maternal Children’s Project”
including screening and prenatal diagnosis to reduce the
birth rate of thalassemia major.
j
• Only a few cities provide free screening for thalassemia
carriers.

10. Techniques available
• Blood count:
in all clinics and hospitals.
• Electrophoresis:
hospitals in counties and cities.
• Automatic HPLC systems or Capillarys:
y p y
hospitals in counties and cities.
• DNA analysis:
some hospitals in cities.

11. HPLC External quality assessment programs

13. Population Screen for Thalassemia
• Screening for carriers
Clinics / Hospital outpatients
Population
• Walk in for voluntary screening
• Specific target groups

14. Specific target groups:
• Premarital couples
• pregnant women and husbands
p g
• Adolescents and young adults
• neonates

15. Prenatal diagnosis in Guangxi Province
(since 1983)
• Obtain fetal DNA:
Chorionic villus sampling
Amninocentesis
Foetal blood sampling
• DNA analysis:
Gap PCR, RDB, DNA sequencing.

16. Prenatal diagnosis centers in Guangxi Province
1 in Liuzhou 2 in Guilin
1 in Baise
1 in Baise
1 in
3 in Nanning
Wuzhou
1 in
Yulin

17. Prenatal diagnosis centers in Guangdong Province
Guangzhou
Shenzhen
Zhuhai

18. Treatment for patients
• Iron Chelation:
Desferrioxamine
Deferiprone
Exjade
• Steam cell transplantation
• Medical insurance cover blood transfusion and iron
chelation, and some expense for transplantation.

19. Thalassemia Home

20. Regular professional education and training
R l f i l d ti dt i i
• Obstetricians, pediatricians, hematologists, nurses
and technicians must receive education and training,
and obtain the qualification for the management of
thalassemia.
thalassemia
• Course workshops seminars and conferences.
Course, workshops, conferences
• organized by the Department of Health of Guangxi
government, Guangxi Medical University etc.

21. The 3rd International Conference on Thalassemia in China & The
2nd Asia Pacific Iron A d
2 d A i P ifi I Academy C f
Conference, 2010
Organizer:
1.
1 Guangxi Medical
University
2. Institute of Molecular
Biosciences, Mahidol
University
3.
3 Asia Pacific Iron
Academy

23. Overall Meeting Evaluation
O ll M ti E l ti
50
45
40
35
30
25
20 # of participants
15
10
5
0
• Total individuals: 253
• China 55 vs. overseas 198

24. Overall Meeting Evaluation
O ll M ti E l ti

25. Overall Meeting Evaluation
O ll M ti E l ti

26. Overall Meeting Evaluation
O ll M ti E l ti

27. TIF workshop for Thalassemia in China,
Nov. 7,
Nov 7 2010

28. Reference Expert Center: The First Affiliated
Hospital, Guangxi Medical University

29. Team: 26 staffs
 O t ti t department
Out-patient d t t
W d
Ward
L b
Laboratory
t

30. Management for thalassemia
Clinical
Cli i l work:
k
• Genetic counseling
• Hb Analysis
• DNA analysis
• Prenatal diagnosis:
• Patients treatmnet
Training:
• seminars
• workshops
g
• 3 months training

31. The Th l
Th Thalassemia Research Center
i R hC t
• The National Key Clinical Specialty for Thalassemia,
approved by the Ministry of Health of China.
• The Key laboratory in Thalassemia Research
• Guangxi Prenatal diagnosis Center for Thalassmia
• The Training Center for medical professionals

32. Thanks