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List of all projects in Asia

China

Haemophilia education, screening and registration

  • Programme
    Haemophilia education, screening and registration
  • Partner
    Ruijin Hospital, Shanghai
  • Represented by
    Prof Hongli Wang
  • Planned duration
    Two years, completed 2008
Objectives
  • Establish cooperation between major haemophilia centres (Shanghai, Tianjin, Beijing, Hefei, Guangzhou, Jinan)
  • Educate doctors, nurses, lab technicians and patients – train-the-trainer concepts
  • Optimise three designated reference laboratories for haemophilia diagnosis
  • Run screening programme
  • Improve national patient registry
Impact
  • 500 patients educated, 2,000 patients received newsletter, patient website established
  • 1,500 of 4,500 registered patients (re-)screened
  • Three equipped haemophilia testing laboratories
  • Doctors, nurses and lab technicians in six major centres trained
  • National haemophilia registry updated to a networked system
Country information
  • Population
    1.3 billion
  • Expected patients
    130,000
  • Known patients
    7,300
  • GDP per capita (USD):
    7,400
  • Health expenditure as % of GDP:
    4.6

Improve and extend comprehensive haemophilia care to further regions

  • Programme
    Improve and extend comprehensive haemophilia care to further regions
  • Partner
    Ruijin hospital, Shanghai
  • Represented by
    Dr Hongli Wang
  • Planned duration
    Two years, started 2010
Objectives
  • Set up national laboratory quality assurance scheme and train laboratory staff
  • Extend haemophilia care – establish 10 new haemophilia centres in existing infrastructure
  • Improve diagnosis of known patients and diagnose new patients
  • Educate patients and medical staff to enhance expertise
  • Update web-based registry and expand it to national level under the auspices of the Ministry of Health
Country information
  • Population
    1.3 billion
  • Expected patients
    130,000
  • Known patients
    7,300
  • GDP per capita (USD):
    7,400
  • Health expenditure as % of GDP:
    4.6

India

Create a national network for paediatric patients

  • Programme
    Create a national network for paediatric patients
  • Partner
    Sir Ganga Ram Hospital
  • Represented by
    Dr Anupam Sachdeva
  • Planned duration
    Three years, started 2009
Objectives
  • Develop training modules to improve the diagnosis, treatment and preventive measures
  • Perform regional workshops for paediatricians – train-the-trainer concept
  • Conduct patient education camps
Country information
  • Population
    1.2 billion
  • Expected patients
    120,000
  • Known patients
    14,000
  • GDP per capita (USD):
    3,400
  • Health expenditure as % of GDP:
    4.2

Iraq

Improvement of diagnosis and establishment of national registry

  • Programme
    Improvement of diagnosis and establishment of national registry
  • Partner
    Medical City Hospital, Baghdad
  • Represented by
    Dr Nazar Al-Anbaki
  • Planned duration
    Two years, started 2007, prolonged
Objectives
  • Improve diagnosis and introduce a comprehensive screening programme
  • Establish a national haemophilia registry
  • Create national haemophilia treatment guidelines
  • Increase disease awareness at authority level
Country information
  • Population
    30.4 million
  • Expected patients
    3,040
  • Known patients
    910
  • GDP per capita (USD):
    3,600
  • Health expenditure as % of GDP:
    3.9

Jordan

Molecular genetic analysis in haemophilia population

  • Programme
    Molecular genetic analysis in haemophilia population
  • Partner
    Jordan University Hospital, Amman
  • Represented by
    Prof Abdalla S.S.Awidi
  • Planned duration
    Two years, completed 2008
Objectives
  • Establish regional molecular reference laboratory
  • Perform carrier detection and prenatal diagnosis
  • Ensure genetic counselling
  • Provide national database
Impact
  • Competent regional molecular reference lab established (for Jordan, Syria and Iraq)
  • National database established
  • 290 patients educated and counselled
  • 40 doctors and 60 nurses as well as lab technicians from Jordan and region trained
  • Results of genetic diagnosis published
Country information
  • Population
    6.5 million
  • Expected patients
  • Known patients
    284
  • GDP per capita (USD):
    5,300
  • Health expenditure as % of GDP:
    9.3

Establish national registry for hereditary bleeding disorders

  • Programme
    Establish national registry for hereditary bleeding disorders
  • Partner
    Jordan University Hospital, Amman
  • Represented by
    Prof Abdalla S.S.Awidi
  • Planned duration
    One and a half years, started 2009, prolonged
Objectives
  • Establish national registry of hereditary bleeding disorders
  • Expand genetic testing and counselling, carrier detection as well as pre-natal diagnosis
  • Perform educational programme for health care professionals and patients
Country information
  • Population
    6.5 million
  • Expected patients
    650
  • Known patients
    284
  • GDP per capita (USD):
    5,300
  • Health expenditure as % of GDP:
    9.3

Lebanon

Multidisciplinary haemophilia care

  • Programme
    Multidisciplinary haemophilia care
  • Partner
    Association Libanaise de l’Hémophilie, Beirut
  • Represented by
    Dr Claudia Djambas Khayat
  • Planned duration
    Two years, started 2007, prolonged
Objectives
  • Strengthen haemophilia treatment centre in Beirut by implementing multidisciplinary approach
  • Design and implement broad educational haemophilia programme for health care professionals and patients with their families
  • Extend basic programme to four regions
Country information
  • Population
    4.1 million
  • Expected patients
    410
  • Known patients
    309
  • GDP per capita (USD):
    14,200
  • Health expenditure as % of GDP:
    8.1

Malaysia

Educational Programme for Haemophilia and vWD Patients & Parents

  • Programme
    Educational Programme for Haemophilia and vWD Patients & Parents
  • Partner
    The National Blood Centre, Kuala Lumpur
  • Represented by
    Dr Faraizah Abdul Karim
  • Planned duration
    Three years, completed 2011
Achievements - Training & education
  • Three camps for recently diagnosed patients and families from remote areas: 35 parents; 27 children up to seven years; 45 teenage boys; women with bleeding disorders.
  • New educational material on haemophilia and allied bleeding disorders developed
  • Guidelines on how to build and organise seminars established
Country information
  • Population
    28.7 million
  • Expected patients
    2,870
  • Known patients
    2,059
  • GDP per capita (USD):
    14,700
  • Health expenditure as % of GDP:
    4.8

Pakistan

Capacity building for haemophilia care programme – a pilot study

  • Programme
    Capacity building for haemophilia care programme – a pilot study
  • Partner
    National Institute of Blood Disease and Bone Marrow Transplantation (NIBD), Karachi
  • Represented by
    Dr Tahir S. Shamsi
  • Planned duration
    Two years, completed 2010
Achivements - Training & education
  • Four master trainers trained in Karachi to perform testing of specific clotting factor levels and learn how to train other healthcare providers
  • Training materials for healthcare professionals developed and distributed: ‘Practical Haemostasis: basic facts and practical application’ – book
  • Five full-day haemostasis workshops conducted by master trainers
  • Six posters and one oral presentation delivered at haematology conference in 2009 in Karachi
  • Project completion report and relevant documents submitted to Director General Health, Ministry of Health, Government of Pakistan and the Executive Director, Pakistan Medical Research Council
  • Self-sustained model for haemophilia care established at NIBD
Achievements - Diagnosis & registries
  • Patient database developed and available for use
  • Almost 600 haemophilia and other allied bleeding disorder patients diagnosed – 140 new patients
  • Guidelines for diagnosis of congenital bleeding disorders developed and submitted to Ministry of Health
Country information
  • Population
    187.3 million
  • Expected patients
    18,730
  • Known patients
    1,576
  • GDP per capita (USD):
    2,400
  • Health expenditure as % of GDP:
    2.6

Education of people with haemophilia and their families at a national level

  • Programme
    Education of people with haemophilia and their families at a national level
  • Partner
    Pakistan Haemophilia Patients Welfare Society (PHPWS)
  • Represented by
    Dr Tahira Zafar
  • Planned duration
    One year, completed
Objectives
  • Develop educational resource material in local language (Urdu)
  • Educate patients and their families to increase awareness
  • Create awareness amongst government representatives
Impact
  • 300 patients and 300 parents educated
  • Healthcare providers trained
  • Increased awareness at authority level
Country information
  • Population
    187.3 million
  • Expected patients
    18,730
  • Known patients
    1,576
  • GDP per capita (USD):
    2,400
  • Health expenditure as % of GDP:
    2.6

Extension of education programme to a national level

  • Programme
    Extension of education programme to a national level
  • Partner
    Pakistan Haemophilia Patients Welfare Society (PHPWS), Islamabad
  • Represented by
    Dr Tahira Zafar
  • Planned duration
    One year, completed 2011
Achievements - Training & education
  • Educational material in Urdu translated into several languages for national outreach
  • Ten interactive training sessions on haemophilia for 103 patients and 98 family members carried out
  • 100 haemophilia first aid kits developed for urgent handling of bleedings
  • 150 people trained to replicate training with haemophilia first aid kit
  • Awareness created during the training sessions and through several media channels
Country information
  • Population
    187.3 million
  • Expected patients
    18,730
  • Known patients
    1,576
  • GDP per capita (USD):
    2,400
  • Health expenditure as % of GDP:
    2.6

Capacity building for improvement of haemophilia care on a national level

  • Programme
    Capacity building for improvement of haemophilia care on a national level
  • Partner
    National Institute of Blood Disease & Bone Marrow Transplantation (NIBDT), Karachi
  • Represented by
    Dr Tahir S. Shamsi
  • Planned duration
    One and a half years, started 2010
Objectives
  • Training of 20 regional health care professionals to become trainers: train-the-trainer concept
  • Develop and submit treatment guidelines for haemophilia complications for Ministry of Health approval
  • Expand Pakistan 1-registry as national registry of congenital bleeding disorders
  • Submit results to Pakistan Medical Research Council and Ministry of Health
Country information
  • Population
    187.3 million
  • Expected patients
    18,730
  • Known patients
    1,576
  • GDP per capita (USD):
    2,400
  • Health expenditure as % of GDP:
    2.6

Uzbekistan

Improvement of haemophilia diagnostic and treatment level

  • Programme
    Improvement of haemophilia diagnostic and treatment level
  • Partner
    Hematology and Transfusion Scientific Institute, Tashkent
  • Represented by
    Dr Aziza Makhmudova
  • Planned duration
    Three years, completed 2008
Objectives
  • Educate regional doctors and nurses
  • Establish national reference laboratory and train laboratory staff
  • Perform a national screening programme
  • Create national haemophilia registry
Impact
  • National reference laboratory set up and staff trained
  • 13 screening programmes performed nationwide – 1,138 patients screened
  • National haemophilia registry installed and in operation
  • Around 1,400 patients and family members educated
  • 38 doctors, 71 nurses and 2 technicians trained
  • Haemophilia patient educational booklet published
  • Film about haemophilia care in Uzbekistan produced
  • New haemophilia centre built with leveraged private funds
Country information
  • Population
    27.5 million
  • Expected patients
    2,750
  • Known patients
    1,576
  • GDP per capita (USD):
    2,200
  • Health expenditure as % of GDP:
    5.2

School for children at the national haemophilia centre

  • Programme
    School for children at the national haemophilia centre
  • Partner
    Scientific Research Institute of Hematology and Blood Transfusion, Tashkent
  • Represented by
    Dr Aziza Dj. Makhmudova
  • Planned duration
    One year, completed 2010
Achievements - Infrastructure
  • School created with a classroom as well as a computer room and playroom for children with haemophilia (age 2–10)
  • Library established with books, DVDs on eg history, geography, art, world culture
  • 24-hour telephone hotline set up to provide qualified consultation
Achivements - Training & education
  • Classes organised in compulsory basic knowledge as well as computer and art
  • Psychological sessions provided for haemophilia patients and families
  • Swimming classes provided
  • Excursions organised with project minibus to museums, exhibitions and parks
  • Sustainability of school assured through Ministry of Health in close collaboration with hospital
  • Since its opening over 300 children have attended programmes at the school
Country information
  • Population
    27.5 million
  • Expected patients
    2,750
  • Known patients
    1,576
  • GDP per capita (USD):
    2,200
  • Health expenditure as % of GDP:
    5.2

Vietnam

Improvement of haemophilia diagnostic and treatment level

  • Programme
    Improvement of haemophilia diagnostic and treatment level
  • Partner
    National Pediatrics Hospital, Hanoi
  • Represented by
    Dr Duong Ba Truc
  • Planned duration
    Two years, started 2008, prolonged
Objectives
  • Develop guidelines for diagnosis and care of people with hereditary bleeding disorders
  • Carry out a regional screening programme in Bac Giang and Hai-Phong
  • Establish a regional haemophilia registry
  • Enhance patient support network
Country information
  • Population
    90.5 million
  • Expected patients
    9,500
  • Known patients
    754
  • GDP per capita (USD):
    3,100
  • Health expenditure as % of GDP:
    7.2

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Haemophilia education, screening and registration - the full story from the first China project
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Educational Programme for Haemophilia and vWD Patients & Parents - the full story from Malaysia
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Education of people with haemophilia and their families at a national level - the full story of the first Pakistan project
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Capacity building for haemophilia care programme - the full story of the pilot study in Pakistan
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Extension of education programme to a national level - the full story from Pakistan
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Improvement of haemophilia diagnostic and treatment level - the full story of the first NNHF project in Uzbekistan
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School for children at the national haemophilia centre - the full story from Uzbekistan
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