Всемирная федерация гемофилии (ВФГ) играет ведущую роль в мировой работе по адвокации, сплачивая связанное с коагулопатиями глобальное сообщество, с целью добиться справедливого доступа к медицинской помощи и к текущим и инновационным лекарственным средствам. Увязывая глобальную и региональную работу по адвокации, мы стремимся усилить воздействие национальных инициатив по адвокации в отношении политики, медицинского обслуживания и закупок.
Новая программа ВФГ «ПАКТ»: Путь доступа к медицинской помощи и лечению (англ. «PACT») рассчитана на 5 лет и призвана улучшить охват и диагностику, а также расширить доступ к стабильной медицинской помощи для лиц с наследственными коагулопатиями. На достижение этой цели направлены тренинги, образовательная работа, партнерства, инициативы внутри страны и адвокация, подкрепляемая фактическими данными.
Во многих странах мира люди с коагулопатиями на пути получения надлежащей медицинской помощи сталкиваются с целым рядом сложностей. Так, например, разрыв между наблюдаемым и ожидаемым количеством лиц с гемофилией сейчас даже больше, чем предполагалось ранее: на сегодняшний день в мире выявлена лишь одна треть от ожидаемого числа лиц с гемофилией. Кроме того, пандемия COVID-19, значительно увеличив нагрузку на национальные системы общественного здравоохранения, еще нагляднее продемонстрировала необходимость конструктивного диалога с государственными структурами для стабильного оказания и улучшения помощи при коагулопатиях. Программа «ПАКТ» призвана поддержать мировое сообщество лиц с коагулопатиями, предоставляя помощь по вышеперечисленным и другим направлениям.
Программа «ПАКТ» призвана:
Реализация программы будет проходить по трем основным направлениям:
В рамках Академии по адвокации «ПАКТ» лидеры НЧО и лица, занимающиеся пациентской адвокацией, получат необходимые знания и умения для проведения успешных кампаний, основанных на доказательствах. Курс, рассчитанный на восемь месяцев, охватывает следующие темы:
Глобальные и региональные тренинги и совещания (начиная с 2022 г.) станут площадкой, где лидеры сообществ смогут обмениваться наилучшими практиками и опытом по адвокации на основе фактических данных. Наши совместные форумы соберут лидеров НЧО, специалистов здравоохранения и представителей государственных структур для развития диалога и повышения вовлеченности заинтересованных сторон.
The WFH is looking for volunteer subject matter experts to serve as WFH PACT Program mentors for NMOs in target countries and to support the implementation of their national access plans.
The main objective of mentorship is to provide guidance and expertise to WFH NMOs in one or more of the thematic or organizational capacity areas listed below to maximize the impact of their PACT national access plans.
The duration of mentorship will range from six months to four years and will be defined on a case-by-case basis, depending on local needs and the mentor’s availability.
The WFH is seeking mentors with extensive experience and expertise in one or more of the following areas:
National bleeding disorders programs and care delivery
Advocacy and government support
NMO organizational capacities and leadership
NMO outreach and educational programs and services
All individuals who apply to join the PACT Program as a mentor will receive a letter of acknowledgement and will be added to a database of prospective mentors. A matching process will follow, taking into consideration the mentor’s expertise and the needs of NMOs currently implementing national projects as part of the PACT Program. Once a suitable match is established, the mentor will be contacted to confirm their selection.
Next, an introductory meeting between the mentor and the NMO will be facilitated by WFH staff to discuss the objectives and scope of the mentorship and establish both parties’ willingness to work together. Once a mentorship starts, the WFH will ask both the mentor and the NMO to provide periodic progress reports.
Here are some examples of the type of support a mentor could provide to an NMO:
Interested individuals with demonstrated experience and expertise in one of the areas listed above are invited to send their CV and the completed Mentor Expression of Interest Form to [email protected].
Discover the transformative outcomes of our initiatives, showcasing the positive change we have contributed to in the global bleeding disorders community.
К участию в таких компонентах программы «ПАКТ» как «Тренинги и образовательная работа в онлайн-формате» и «Глобальные и региональные совещания» приглашаются все страны. Однако для развития и реализации национальных планов по доступу будет выбрано 20 стран. Десять из 20 стран были отобраны на 2021 год, а оставшиеся 10 стран будут задействованы в 2022 г. Отбор стран осуществлялся по следующим критериям:
В рамках Академии по адвокации «ПАКТ» лидеры НЧО и лица, занимающиеся пациентской адвокацией, получат необходимые знания и умения для проведения успешных кампаний, основанных на доказательствах. Курс, рассчитанный на восемь месяцев, охватывает следующие темы:
Академия по адвокации «ПАКТ» будет проводиться ежегодно. Первая набранная группа приступила к обучению в январе 2022 г. В течение первого года обучение на английском языке в Академии по адвокации «ПАКТ» пройдут от 20 до 30 участников из разных стран мира. Возможно, что в последующие годы будут добавлены другие языки.
Обучающий курс появился благодаря сотрудничеству Всемирной федерации гемофилии (ВФГ), Высшей школы государственной службы имени Роберта Ф. Вагнера в Нью-Йоркском университете (ВШГС им. Вагнера) и рабочей группы экспертов.
Каждая тема изучается на протяжении 6 – 8 недель и включает один модуль для самостоятельной подготовки по интернету и два интерактивных вебинара в режиме онлайн. Онлайн-платформа позволит участникам отслеживать свои успехи, обращаться к ранее пройденным модулям, а также взаимодействовать с другими участниками и наставниками.
В ходе курса обучения участники должны приступить к составлению собственного реального проекта по адвокации в интересах своей НЧО. Участники из стран, задействованных в программе «ПАКТ», должны будут увязать свой проект с национальным планом «ПАКТ» по получению доступа.
По окончании курса участникам выдаются сертификаты от ВФГ и ВШГС им. Вагнера.
На учебу в Академии по адвокации «ПАКТ» участники отбираются в рамках ежегодного открытого приема заявок. Набор в первую группу обучающихся уже завершен.
Для ответа на вопросы по программе «ПАКТ» пишите в ВФГ по электронной почте [email protected].
Информация, полученная в рамках программ ВФГ по сбору данных, используется для выявления различий в оказании медицинской помощи в мире, а также для создания графиков, диаграмм, инфографики и иных инструментов, которые могут использовать НЧО и медработники для усиления посыла в рамках адвокации.
Infographics, based on data from the latest Annual Global Survey (AGS) and the World Bleeding Disorders Registry (WBDR), are available for download as an image, a PDF or as slides, and can be used for presentations and advocacy work.
ВФГ разработала интуитивно понятную пользователям систему визуализации данных, которая включает настраиваемые запросы в режиме реального времени. Система позволяет анализировать и сравнивать текущие и исторические данные для отчетности, исследований или в рамках адвокации.
Познакомьтесь и загрузите диаграммы на основе данных ГВО, разработанные с помощью нашей новой системы сбора данных.
WFH AGS mini reports are advocacy tools that provide more in-depth perspective and context to AGS data.
Также имеются публикации в рецензируемых изданиях относительно всемирных данных и пациентских регистров по гемофилии и другим коагулопатиям.
Stonebraker JS, Bolton-Maggs PHB, Brooker M, Evatt B, Iorio A, Makris M, O’Mahony B, Skinner MW, Coffin D, Pierce GF, Tootoonchian E, The World Federation of Hemophilia Annual Global Survey 1999‐2018. Haemophilia. 2020 Jul;26(4):591-600. doi: 10.1111/hae.14012. Epub 2020 Jun 4.
Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C, Germini F; Data and Demographics Committee of the World Federation of Hemophilia, Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019 Oct 15;171(8):540-546. doi: 10.7326/M19-1208. Epub 2019 Sep 10.
Coffin D, Herr C, O’Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.
Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. on behalf of the Data and Demographics Committee of the World Federation of Hemophilia (2017), Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia. 2017 Jan;23(1):e1-e7. doi: 10.1111/hae.13127. Epub 2016 Dec 8.
В рамках серии круглых столов ВФГ по генной терапии собираются национальные членские организации (НЧО), защитники прав пациентов, медицинские работники, регуляторы и представители фармакологической отрасли для общего диалога о текущих мировых достижениях и ожидаемых трудностях, связанных с генной терапией при гемофилии.
Участие во встречах круглых столов ВФГ по генной терапии (КСГТ) возможно только по приглашению. Ежегодно приглашается около 80 участников из международного сообщества, связанного с коагулопатиями. Сюда входят ведущие научные эксперты, регуляторы, плательщики, лидеры организаций пациентов и защитники их прав, медработники, ученые и представители фармакологической отрасли.
Цель данной серии – способствовать лучшему пониманию сложностей в развитии генной терапии для лиц с гемофилией (ЛсГ) в разных странах мира. Основная проблематика и обсуждения касаются вопросов всеобщего доступа к генной терапии, регуляторных и финансовых сложностей, неизвестных аспектов генной терапии и долгосрочного наблюдения за ее безопасностью и эффективностью. Также учитываются точки зрения многих заинтересованных сторон и глобальные перспективы. ВФГ публикует отчеты КСГТ.
Сопредседатели
Гленн Пиэрс, США
Деклан Нун, Ирландия
Члены
За программу отвечает комитет со сменным составом, куда входят восемь медработников, а также лица с коагулопатией и/или ухаживающие за ними лица.
С прошедшими программами можно ознакомиться здесь:
Keep up to date on the latest developments in the bleeding disorders community, from medical advances to important events.
Advocacy
Humanitarian Aid
Identification and diagnosis
Treatment and care
Research and data collection
Training
Education & eLearning
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.
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.
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.
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
Van Creveldkliniek
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)
Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University
University of Toronto Hemophilia Centres
St. Michael’s Hospital
Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas
Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc
Hemofiliecentrum Leuven, University of Leuven
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
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.
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.
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].
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.
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.
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.”
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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].
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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.
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].
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.
| 2012 | Christine Lee United Kingdom |
| 2006 | Dr. Bruce Evatt United States |
| 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 |
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital
Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
| 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) |
| 2021 | Axel Seuser Germany |
| 2019 | Dr. Adolfo Llinás Colombia |
| 2017 | Pamela Hilliard Canada |
| 2015 | Kathy Mulder Canada |
| 2013 | James Luck United States |
| 2012 | Piet de Kleijn The Netherlands |
| 2011 | Dr. Lily Heijnen The Netherlands |
| 2010 | Dr. Horacio Caviglia Argentina |
| 2009 | Jerome D. Wiedel United States |
| 2008 | Dr. Federico Fernández-Palazzi Venezuela |
| 2007 | Michael Heim Israel |
| 2006 | Brenda Buzzard United Kingdom |
| 2005 | Dr. Marvin Gilbert United States |
| 2021 | Baolai Hua Yangzhou College, Xuzhou Medical University |
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis |
| 2019 | Maarten Eerdekens Belgium |
Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy |
| 2017 | Fabio Souza Brazil |
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis |
| 2015 | SM Javd Mortazavi Iran |
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure |
| 2013 | Lize F.D. van Vulpen United States |
A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components |
| 2012 | Horacio Caviglia Argentina |
Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients |
| 2011 | Nick Goddard United Kingdom and Monique van Meegeren The Netherlands |
Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro |
| 2010 | Lydia Abad-Franch Spain |
Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac |
| 2009 | Sebastien Lobet Belgium |
Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables |
| 2008 | Jose Alberto Tlacuilo-Parra Mexico |
Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia |
| 2007 | Natalie Jansen The Netherlands |
Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage |
| 2006 | Axel Seuser and E. Kusch Germany |
Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia |
| 2005 | Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders The Netherlands |
The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities |
| 2004 | Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber The Netherlands |
Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study |
| 2003 | Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Germany |
How to advise young haemophiliacs to find the right sport? A new and safe algorithm |
| 2002 | James Luck, Jr. and Mauricio Silva United States |
Long-Term Review of Total Knee Arthroplasty |
| 2001 | Federico Fernández-Palazzi Venezuela |
Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses |
| 2000 | Horacio Caviglia Argentina |
Pseudotumours |
| 1999 | William J. Ribbans and J.L. Hicks United Kingdom |
Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century |
| 1998 | Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia |
Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis |
| 2012 | Martha Patricia Monteros Rincon Mexico |
| 2010 | Antonia Luque de Garrido Venezuela |
| 2008 | Jean Michel Bouchez France |
| 2006 | Yuri Zhulyov Russia |
| 2004 | Ashok Verma India |
The outcomes of interest collected in the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and quality of life. The quality of life scale, EQ-5D-5L, is part of the WBDR extended data set. It is available in more than 130 languages and in different modes of administration.
If you would like a different language, please email us at [email protected].
Amharic
Arabic (Algeria, Morocco, UAE)
English (Ghana, India, Jamaica, Kenya, Nigeria, and the Philippines)
French (Algeria, Belgium, and Morocco)
Hungarian
Malayalam
Nepali
Punjabi
Russian (Ukraine)
Serbian
Spanish (Argentina, Panama, Spain, and the U.S.A)
Swahili
Tagalog
Thai
Twi
Ukrainian
Urdu
Vietnamese
For more information, please visit: euroqol.org/eq-5d-instruments/eq-5d-5l-about.
The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.
The WBDR includes five functional scales as part of its extended data set:
The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.
The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.
University of North Carolina Hemophilia & Thrombosis Center
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Orthopaedic Hemophilia Treatment Center
Mount Sinai School of Medicine
Mount Sinai Medical Center
Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School
Hemophilia & Thrombosis Treatment Center
University of California San Diego
Всемирная федерация гемофилии основана в 1963 г. канадским бизнесменом Франком Шнабелем, у которого была врожденная тяжелая гемофилия А. Он верил в то, что сообща пациентские организации способны значительно повысить свою эффективность и достигнуть большего в интересах людей с коагулопатиями. На первом конгрессе ВФГ в Копенгагене (Дания), прошедшем 25 июня 1963 г., присутствовали представители 12 стран. Сегодня в глобальную сеть ВФГ входят национальные членские организации (НЧО), которые представляют интересы лиц с гемофилией и другими наследственными коагулопатиями из 147 стран.
