家 »

世界出血性疾患レジストリ

世界出血性疾患レジストリ

WBDRは、血友病患者(PWH)およびフォン・ヴィレブランド病(VWD)患者の標準化された臨床データを収集する唯一のグローバルレジストリです。このレジストリに参加している血友病治療センター(HTC)の大規模ネットワークにウェブベースのデータ入力プラットフォームを提供し、データの収集と管理を行っています。

WBDRは、この5年間、PWHのデータを収集してきました。2023年の初めには、世界血友病連盟(WFH)がWBDR VWDモジュールを立ち上げ、VWDの診断と管理、およびVWD患者の健康状態の転帰に関するデータを収集する初のグローバルレジストリを開設しています。WBDRのデータは、エビデンスに基づくアドボカシーや研究のため、そして臨床現場の改善を進める上で大変貴重です。

WBDRへの参加

WBDRは、世界中の出血性疾患患者のケアを向上させる重要なデータ収集ツールです。

WBDR データを使用して患者ケアを改善するための道筋

WBDR-improving-patient-care-sm-EN
データを収集、保存、使用するための枠組みをHTCに提供
研究の促進
アドボカシー活動に対する情報提供
患者報告データ
治療ガイドラインの遵守に関する情報提供と遵守の確立
治験参加候補者の特定
価値を高めるための既存データの再利用

WBDRへの参加をご検討の場合、HTCは以下の基準を満たす必要があります。

  • インターネットにアクセスし、ウェブベースのデータ入力システムに接続できること
  • 本レジストリに機密の患者データを入力できる認定者がいること
  • 長期間にわたって本レジストリに患者を登録し、各患者来院時に追跡調査質問票に回答する意思があること

貴HTCがWBDRへの参加にご興味をお持ちの場合は、WFH([email protected]宛て)に電子メールを送付してください。現地機関または保健省から倫理審査の承認を取得する手順をご案内します。

HTCが倫理審査の承認を取得したら、データ入力を担当する予定の者は、患者登録開始前にWBDRのデータ入力トレーニングを受講しなくてはなりません。

International Data Integration Program(国際データ統合プログラム)では、既存の出血性疾患レジストリのリソースを集約し、既存の患者レジストリからWBDRへのデータ転送を推進することによって、現存のデータの有用性を最大限活用できるようになります。このプログラムは、自国のデータを提供しWBDRで示すことによって、この世界的な活動に参加することを希望する国が利用できます。詳細についてはWFH([email protected])へお問い合わせください。

現在ご協力いただいている例

  • Czech National Haemophilia Programme Registry(チェコ国内血友病プログラムレジストリ:CNHPR):CNHPRは、チェコ共和国内の小児向け血友病治療センター8施設、成人向け血友病治療センター8施設から国内のデータを収集しています。proof-of-concept(概念実証)試験の一環として、2018年のCNHPRデータから、最小限の匿名化したデータ一式をWBDRに取り込みました。初の取り込みの成功に続き、2019年以降は、取り込み対象のデータセットに、遺伝子検査、血友病関節健康スコア(Hemophilia Joint Health Score:HJHS)、併存疾患および入院に関するデータを追加しました。CNHPRから得たデータは引き続き年に1回、WBDRにアップデートしています。
  • Thai Society of Hematology(タイ血液学会)のHereditary Bleeding Disorders Registry(遺伝性の出血性疾患レジストリ:HBDR):2021年、Thai Society of Hematology(タイ血液学会:TSH)のHBDRは、WBDRと協力して、この世界的なレジストリとTSHの2020年および2021年のデータを統合しました。TSHのHBDRとWBDRが協同で取り組んだ結果、最新の取り込みの一部として、血友病AおよびBの患者300名の最小限および長期間にわたるデータセットがWBDRに転送されました。HBDRからWBDRへのデータ転送に関する詳細情報は、こちらからご覧いただけます(英語のみ)。

WBDRに参加すれば、この重要なリソースの構築と将来の世界的な出血性疾患治療の改善に出血性疾患患者(PWBD)の皆さまが積極的な役割を果たすことができます。あなたがPWBDか介護者であり、WBDRへの登録に関心がおありでしたら、通院中のHTCに連絡を取り、WBDRへの参加について尋ねてみてください。

WBDRデータ

WBDRデータベースでは、人口統計、診断および臨床領域に及ぶ血友病とフォン・ヴィレブランド病(VWD)のデータセットを扱っています。

WBDRは、血友病のデータセットを対象として2018年に開設されました。2023年の初めにはVWDのデータセットが追加となり、VWD患者の登録が開始されました。このレジストリでは、5つの機能評価尺度と1つのQOL(生活の質)評価尺度を使用しています。

WBDRに保存するあらゆる患者情報は匿名化され機密保持の対象となります。Health Solutionsのデータ取扱い方針ガイドラインは、CEマーク(Conformité Européenne。EUの基準に適合していることを表示するマーク)と英国IGSoC(Information Governance Statement of Compliance[情報ガバナンス コンプライアンス声明])基準をともに固守し、一般データ保護規則(GDPR)に準拠しています。

WBDR 2023 データ報告書には、血友病治療センター(HTC)119施設と44カ国の血友病患者およびVWD患者14,342名のデータが含まれています。WBDRのデータを発表物、出版物またはその他の研究資料の中で利用する場合は、WFHのクレジットを表示してください。

過去の報告書(英語のみ):

HTCへのサポート

WFHは、3種類のWBDRプログラムを提供し、HTCがWBDRデータを使用して品質データを収集し、調査研究を実施できるようにしています。

WBDRデータ品質認定プログラム

WBDRは、包括的なデータ品質認定(Data Quality Accreditation:DQA)プログラムを提供しています。このプログラムには、堅固なデータクリーニングや検証プロセスが含まれており、これによりデータの完全性、精度、整合性が強化されています。WBDRのデータ品質チームはすべてのHTCと協力して、収集されたデータの品質に関するトレーニングやフィードバックを行っています。

WBDRのデータ品質段階
WBDR-data-quality-levels
1
基礎
(Basic)
(0~49%)
2
発展
(Developed)
(50~74%
3
中程度
(Intermediate)
(75~84%)
4
高度
(Advanced)
(85~94%)
5
きわめて高度
(Leaders)
(95~100%)

WBDR研究支援プログラム(RSP)

WBDR研究支援プログラム(Research Support Program:RSP)は、WBDR HTCが自身のWBDRデータを収集し、分析し、使用するよう、HTCへの動機づけや支援を促す目的で設計されています。データ収集経験の少ない国々がWBDRに参加し、研究やアドボカシーに自身のデータを使用できるよう勧めることを目標としています。

WBDR HTC資金援助プログラム(HFP)

WBDR HTC資金援助プログラム(HTC Funding Program:HFP)は、低所得国および低中所得国のWBDR HTCでのデータ収集作業を支援するために資金提供する目的で設計されています。このプログラムでは、HTCの患者登録状況を改善し、入力データの品質と完全性が向上するよう支援することをめざしています。

WBDRのマニュアルとログイン

WBDRでのデータ入力に関する詳細について、WBDRの参加HTCは以下の文書をご参照いただくことをお勧めします(英語のみ)。

myWBDRアプリ

myWBDR(マイWBDR)は、血友病および/またはフォン・ヴィレブランド病(VWD)であると診断され、世界出血性疾患レジストリ(WBDR)に登録された患者さんを対象として設計されたモバイルアプリです。使いやすいプラットフォームで、出血エピソード、痛みの程度、治療、EQ-5D-5LやPROBEの質問票による全般的健康状態を簡単に記録し、モニタリングすることができます。

よくある質問(FAQ)

何かご不明な点がございましたら、WBDRのよくある質問(FAQ)をご覧いただくか、WFH([email protected])へお問い合わせください。

お問い合わせ

WBDRチーム([email protected])へご連絡ください。

WBDR研究支援プログラム

HTCがWBDRのデータを解析、活用できるよう支援

WBDR HTC資金援助プログラム

参加HTCでのデータ入力作業に対する資金提供

WBDR 2021データ報告書

参加国から得られた人口統計や臨床データをまとめた年次報告書

御礼

ご自身のデータの共有を快く受け入れてくださった出血性疾患患者の皆さま:世界中の出血性疾患患者さん(PWBD)のケアの質の向上にご協力いただきありがとうございます。

WBDR HTCの皆さま:個々のデータがWBDRのデータ品質基準に合致するよう参加HTCでご尽力くださっている皆さまに心より御礼申し上げます。

WFHは、当連盟がこの重要な活動を継続して展開できるよう多くの金銭的ご支援をくださいましたスポンサーの皆さまに、厚く御礼申し上げます。WBDRは、以下の皆さまから資金提供をいただいております。

ビジョナリーパートナー
コラボレーティングパートナー

検索
Close this search box.

SEARCH

Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.

Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic care and surgery
  • Laboratory diagnosis and Molecular genetics
  • Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Blood banking
  • Orthopedic care and surgery
  • Physiotherapy
  • Diagnostic assessment of platelet functional defects

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Blood banking (on request)

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Molecular genetics
  • Blood banking
  • Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

  • Adult hematology services
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and molecular genetics
  • Nursing
  • Dentistry
  • Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Orthopedic care and surgery

Belgium - Leuven

Year of IHTC designation: 1972

Hemofiliecentrum Leuven, University of Leuven

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis (not genetics)
  • Nursing
  • Psychology
  • Social services
  • Orthopedic care and surgery

Austria - Vienna

Year of IHTC designation: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Areas of Specialty

  • Adult hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Centre

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Dental care
  • Blood banking
  • Psychology
  • Social work

Argentina - Buenos Aires

Year of IHTC designation: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy
  • Dental care
  • Orthopaedic care and surgery
  • Laboratory diagnosis and genetic diagnosis
  • Nursing
  • Psychology
  • Social services

Spain - Madrid

Year of IHTC designation: 2018

Hospital Universitario La Paz

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Spain - Valencia

Year of IHTC designation: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and Social services

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

  • Adult and pediatric hemostasis
  • Molecular genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and social services

Hemophilia of Georgia

Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.

WFH President's Award - Recipients

National Bleeding Disorders Foundation

The National Bleeding Disorders Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.

Legacy Gift

Do you sometimes wish you could do more? A bequest is a simple way for you to make a significant gift without changing anything about your financial security and lifestyle today. Your legacy will sustain care for the generations to come.

Download these sample clauses to give to your legal advisor.

We understand if you prefer to remain anonymous, but we would be very honoured if you would let us know of your intentions so that we may thank you personally. We would also be happy to answer any questions you may have or give you additional information. Please contact Jennifer Laliberté at 514‑875‑7944 ext.2822 or [email protected].

Disclaimer

The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.

Website privacy policy

The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.

Use of links

Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”

Use of text and images

All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.

The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at [email protected].

Opt-Out or Change Your Contact Information

Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.

Questions about our policies

If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].

Fraud alert

Unauthorized solicitations – Warning

The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.

International Award for Outstanding Service - Recipients

International Lifetime Achievement Award - Recipients

Previous years

2012Christine Lee
United Kingdom
2006Dr. Bruce Evatt
United States

International Healthcare Volunteer Award - Recipients

Previous years

2012 Piet de Kleijn
The Netherlands
2010 Dr. Mammen Chandy
India
2008 Dr. Man-Chiu Poon
Canada
2006 Dr. Norma de Bosch
Venezuela
2004 Dr. Parttraporn Insarangkura
Thailand

Dr. Carol K. Kasper
United States

United Kingdom - London

Year of IHTC designation: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy
  • Molecular genetics
  • Psychology/Social services

United Kingdom - Manchester

Year of IHTC designation: 2008

Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • National Hemophilia database

United Kingdom - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • Physiotherapy/Occupational therapy

United Kingdom - Sheffield

Year of IHTC designation: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics

Twins of the Year Awards

2020 Aluva (India) – Newcastle (UK)
2019 Yogyakarta / Solo (Indonesia) – Utrecht (Netherlands)
2018 Abidjan (Ivory Coast) – Brussels (Belgium)
2017 Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016 Kampala (Uganda) – London (UK)
2015 Varna (Bulgaria) – Bonn (Germany)
2014 Arequipa (Peru) – Los Angeles (USA)
2013 Davangere (India) – Liverpool (UK)
Ludhiana (India) – Detroit (USA)
2012 Hanoi (Vietnam) – Melbourne (Australia)
2011 Manado (Indonesia) – Utrecht (Netherlands)
2010 Delhi (India) – Winnipeg (Canada)
Yaoundé (Cameroon) – Geneva (Switzerland)
2009 Chisinau (Moldova) – Warsaw (Poland)
Colombo (Sri Lanka) – Vellore (India)
2008 Gaborone (Botswana) – Philadelphia (USA)
2007 Vientiane (Laos) – Brest (France)
Damascus (Syria) – Montpellier (France)
2006 Lima (Peru) – Fort Worth (USA)
2005 Yerevan (Armenia) – Minneapolis (USA)
Casablanca (Morocco) – Caen (France)
2004 Beirut (Lebanon) – Geneva (Switzerland)
Santo Domingo (Dominican Republic) – Caracas (Venezuela)
2003 Cairo (Egypt) – Knoxville (USA)
2002 Moscow (Russia) – Liverpool (UK)
Panama – Valencia (Spain)
2001 Bangalore (India) – St. Louis (USA)
2000 Pune (India) – Bradford (UK)
1999 Montevideo (Uruguay) – Buenos Aires (Argentina)
Tianjin (China) – Calgary (Canada)
1998 Plovdiv (Bulgaria) – Bonn (Germany)
1997 Bogota (Colombia) – Los Angeles (USA)
Tartu (Estonia) – Stockholm (Sweden)
1996 Timisoara (Romania) – Munich (Germany)
Riga (Latvia) – Munster (Germany)
1995 Klaipeda (Lithuania) – Malmo (Sweden)
1994 Bratislava (Slovakia) – Tel Hashomer (Israel)