TIF Collaborating Centres for Haemoglobinopathies
Improving Quality of Care for Haemoglobin Disorders Worldwide: A Long-Term Commitment of the Thalassaemia International Federation (TIF)
Globally, there is no organized, international, disease-specific mechanism that operates on clear, evidence-based criteria to ensure the quality, continuous measurement, and improved performance of treatment centres for haemoglobin disorders.
This, along with a number of other medical, public health, social and geopolitical, environmental and economic factors, has led to significant inequalities in the quality care received by patients with haemoglobinopathies across different countries.
Thalassaemia International Federation’s Global Thalassaemia Review (GTR 2019-2023) has documented, based mainly on the patients’ perspective, the many and multiple unmet needs of patients with these disorders across 48 countries within the six regions of the world as identified by WHO.
While Centres of Reference for Haemoglobinopathies are primarily located in developed, Western economies, such as the European Reference Networks (ERNs) – EuroBloodNet, there are no unified networks for sharing knowledge and expertise, limiting efforts to standardize care on a global scale.
A TIF Initiative
In 2017, the Thalassaemia International Federation (TIF), in collaboration with national experts and health and social competent authorities (mainly Ministries of Health), launched a voluntary certification program for treatment centres worldwide. This initiative aims to:
- Promote the standardization of care across treatment centres globally.
- Enhance accountability for the quality of services provided to patients.
- Ensure optimal performance in the treatment of haemoglobinopathies.
Through this programme, co-ordinated by Dr. Androulla Eleftheriou, Executive Director of the Thalassaemia International Federation (TIF), centres receive personalized recommendations for continuous improvement. Successful centres are awarded the “Certificate of TIF Collaborating Centre for Haemoglobinopathies” and become part of a global network of collaborating centres.
The successful centres are recognized for their ability to:
- Offer short-term and long-term training to local and regional physicians
- Encourage and conduct research on haemoglobin disorders
- Facilitate the exchange of best practices
- Provide support in resolving complex and challenging cases
- Respond to crises
- Undertake joint projects
- Form formal collaborations with other centres within the network
- Adopt or develop national guidelines based on TIF’s international guidelines
- Conduct surveys to assess patient-reported outcomes
- Provide ongoing education for medical professionals and patients
- Engage in regular communication and provide recommendations to national health and social authorities
For more information on TIF’s Collaborating Centres for Haemoglobinopathies, download the 2024 Informational Booklet.
Certification Process
Project Leaders:
Project Manager:
Dr Androulla Eleftheriou, BSc, MSc, PhD
Executive Director, TIF
Email: thalassaemia@cytanet.com.cy
Dr Michael Angastiniotis, MD
Medical Advisor, TIF
Email: michael.angastiniotis@thalassaemia.org.cy
Ms Katia Pelides
Senior Educational Programme Officer
Email: thalassaemia-kp@thalassaemia.org.cy
Advisory Board & Evaluation:
- TIF has established an Advisory Board consisting of internationally renowned medical experts to guide and oversee the certification process.
- Centres are assessed on-site by the Advisory Board based on EU criteria for establishing reference centres for haemoglobinopathies.
- Centres receive ongoing support and guidance once they qualify, including assistance with educational initiatives and collaborative research projects.
Members of the Advisory Board (in alphabetical order)
Professor Hanny Al-Samkari
Classical Hematologist and Clinical Investigator, The Peggy S. Blitz Endowed Chair in Hematology/Oncology | Associate Professor of Medicine, Harvard Medical School, US
Professor Yeşim Aydinok
Pediatric Hematologist, Ege University Hospital Department of Paediatric Haematology, Director of Hospital Blood Bank, Izmir, Turkey
Professor Maria Domenica Cappellini
Professor of Medicine, Department of Clinical Sciences and Community, University of Milan, IRCCS Ca’ Granda Foundation Maggiore Policlinico Hospital, Milan, Italy
Dr. Perla Eleftheriou
Consultant Haematologist, Joint Red Cell Unit, Haematology Department, Clinical Lead for Red Cell Haematology, University College London, UK
Professor Dimitrios Farmakis
Professor of Cardiology, National & Kapodistrian University of Athens, Athens, Greece | Associate Professor at University of Cyprus Medical School
Professor Antonis Kattamis
Professor of Pediatric Hematology/Oncology, Head, Division of Pediatric Hematology/Oncology, First Department of Pediatrics, ‘Aghia Sophia’ Children’s Hospital, Greece
Professor Kevin Kuo
Associate Professor Division of Haematology, Department of Medicine, Faculty of Medicine, University of Toronto, Canada
Professor Antonio Piga
Professor of Paediatrics & Dean of the Medicine School, San Luigi University Hospital, Turin University, Italy
Professor John Porter
Professor of Haematology, Head of the Joint Red Cell Unit for UCLH & Whittington Hospitals, University College London, UK
Dr. Farzana Sayani
Physician, Red Blood Cell Disorders Program, Division of Medical Oncology and Haematology, Department of Medicine, University of Toronto, Canada
Professor Ali Taher
Professor of Internal Medicine, Haematology Oncology, Vice Chair Research, Department of Internal Medicine, American University of Beirut Medical Centre, Lebanon
Professor Efthymia Vlachaki
Associate Professor of Hematology, 2nd Department of Internal Medicine, and the Adult Thalassemia Unit at Hippokratio Hospital, Aristotle University of Thessaloniki, Greece
Professor Constantina Politis
Emeritus Professor of Medicine, National and Kapodistrian Athens University, Scientific Advisor at the Hellenic National Public Health Organisation, Greece
TIF Collaborating Centres
Questions & Answers
Certification is a voluntary process of standardization. Centres are evaluated by official bodies/organisations to assess their compliance with accepted standards of care, which are based on evidence and result in the best possible patient outcomes. The evaluation also considers areas such as preventive services and patient satisfaction.
- International recognition as a TIF Collaborating Centre.
- Participation in offering training programs and participating in collaborative projects, including research and receiving informal consultations on challenging cases.
- Feedback on clinical and managerial practices to improve care.
- Contribute to improving thalassaemia care worldwide through joint activities with TIF.
- Form or join a global network of excellence centres, fostering the exchange of expertise and joint research initiatives.
- Meet government or donor certification requirements with the TIF certificate.
TIF’s standards are based on:
- International Standards for Ambulatory Care – JCI 2015
- General Standards for Rare Disorders – EUCERD
- Disease-Specific Evidence-Based Guidelines
- Express interest by contacting TIF at thalassaemia@cytanet.com.cy
- Complete a preliminary application form.
- On-site visits are conducted by members of the Advisory Board.
- Once certified, the centre receives ongoing support and guidance from the board.
The certification process evaluates several key aspects, including:
- Centre Governance and Infrastructure: Facility quality, staff competence, financial management, research activities, and teaching capabilities.
- Patient Support: Service availability, patient information, involvement, privacy, safety and overall well-being.
- Quality of Clinical Care: Treatment safety, diagnostics, blood transfusions, iron overload monitoring, nutritional assessments, and the presence of a multidisciplinary medical team.
- Patient-Reported Outcomes: Interviews with patients to assess their satisfaction with the treatment received.
Compliance with Standards of Care
TIF’s Advisory Expert Panel will assess centres using the TIF Standards for Haemoglobinopathy Reference Centres (Angastiniotis, M., Eleftheriou, A., Naveed, M., Assaf, A. A., Polynikis, A., Soteriades, E. S., & Farmakis, D. (2023). TIF Standards for Haemoglobinopathy Reference Centres. Thalassemia Reports, 13(1), 10-20. https://doi.org/10.3390/thalassrep13010002) which were put forward by an expert panel and are largely based on the JCI-recommended guidelines.
To encourage maximum participation from centres in this project and support them in enhancing their services, a comprehensive report will be provided after the experts’ visit. This report will assess each centre’s compliance with baseline standards for haemoglobinopathy care and will highlight key strengths and weaknesses. Additionally, where required, it will offer specific recommendations for improvements, along with a defined timeframe for implementing these changes.
- Treating centres for thalassaemia worldwide, whether standalone or hospital-affiliated, are eligible to apply through their administrative hierarchy.
- Ministries of Health may also apply directly to TIF for the certification of multiple centres in their country, given their responsibility to support quality improvement measures.
Submit an expression of interest via email to thalassaemia@cytanet.com.cy or thalassaemia-kp@thalassaemia.org.cy
- The evaluation process and technical support are provided by TIF free of charge, but applicants are responsible for covering the travel and accommodation expenses of the evaluation team.
- The certification is valid for 2 years, after which centres must undergo a new evaluation to renew their status as a TIF Collaborating Centre for Haemoglobinopathies.