Announcements

Per the Guidelines and Guidance (G&G) Committee process for guidance manuscripts, draft manuscripts go through a public comment period and G&G Committee review and approval before submitting the manuscript to the Journal of Thrombosis and Haemostasis (JTH).

The G&G Committee would like to announce that the guidance manuscript titled, " Laboratory interpretation and reporting of lupus anticoagulant testing: Guidance from the ISTH SSC Subcommittee on Antiphospholipid Syndrome," is now open for public comment. Note: This manuscript is confidential and in draft form.

Please click here to submit your comments by Friday, May 29, 2026.

We invite you to participate in an international survey conducted under the ISTH SSC Subcommittee on Cancer-Associated Thrombosis and Hemostasis exploring Monoclonal Gammopathy of Thrombotic and Bleeding Significance (MGTS/MGBS).

This study aims to collect real-world clinical experience on patients with paraproteinemia who develop thrombotic or bleeding events, where a causal association with the monoclonal protein is suspected. Given the rarity and diagnostic complexity of these entities, your contribution is essential to improving recognition, defining diagnostic pathways, and informing management strategies.

The survey involves reporting anonymised case-based clinical data and takes approximately 30 minutes per case. All contributors will be acknowledged as collaborators in resulting publications and presentations.

Your participation will directly support the development of future ISTH guidance and consensus recommendations in this emerging field. We would greatly appreciate your contribution and expertise.

Please take a moment to ensure each patient is enrolled only once, even if multiple physicians collaborate on the patient's diagnosis and management. 

For any clarifications or issues, please contact: 

Despina Fotiou; desfotiou@gmail.com and Vasiliki Gkalea vasiliki.gkalea@gmail.com

Prophylactic hemostatic therapy to prevent bleeding-related joint and other organ dysfunction has fundamentally transformed the management of severe hemophilia. Before the widespread adoption of such prophylaxis, individuals with severe hemophilia experienced recurrent spontaneous bleeding beginning in early childhood, leading to progressive hemophilic arthropathy, chronic pain, disability, and reduced life expectancy. Based on extensive clinical trials and real-world evidence, regular prophylaxis with CFCs has been established as the only effective treatment strategy for hemophilia that can modify the bleeding phenotype in a clinically meaningful way.

To standardize terminology across clinical practice and research, the ISTH Scientific and Standardization Committee (SSC) published definitions of prophylaxis in hemophilia in 2014. Prophylaxis was defined as the regular administration of hemostatic therapy intended to prevent bleeding. It was categorized into primary, secondary, and tertiary strategies based on the timing of prophylaxis initiation relative to bleeding events and their complications. They have been widely adopted in clinical studies, registries, and treatment guidelines.

Over the past decade, the therapeutic landscape of hemophilia has evolved substantially with the emergence of non-factor therapies (NFTs) and extended half-life products. These therapies differ in mechanisms of action, pharmacokinetics, and administration, but share the ability to enhance hemostasis and prevent bleeding. An ultra-long half-life FVIII concentrate has further expanded available options. These advances enable much earlier initiation of prophylaxis, reduce treatment burden, and minimize the need for central venous access. While concerns regarding inhibitor development persist with CFC exposure, NFTs do not carry the same direct risk profile. Treatment goals have consequently shifted toward the prevention of all bleeding and further optimization of outcomes.

The objective of this SSC communication is to update the definitions of prophylaxis in hemophilia while maintaining conceptual continuity with the widely adopted 2014 framework.

Please send any feedback/comments to be sent to Johnny Mahlangu at the following email address: johnny.mahlangu@nhls.ac.za

Hello –

You are invited to participate in this research project “A Survey of Anticoagulant (Warfarin & LMWH) Periprocedural Management for Those with Mechanical Heart Valves” (Pro0016149). Your participation is greatly appreciated, please click on the following link to complete the survey: https://redcap.link/periopmechanicalvalves 

The survey will take ~ 10 minutes to complete. 

Thank you for your consideration. If you have questions, please contact Dr. Tammy Bungard at tammy.bungard@ualberta.ca.

Co-Investigators: Dr. Ava Azhir, Dr. Cynthia Brocklebank, Dr. James Douketis, Dr. Darcy Lamb, Dr. Jennifer Lowerison, Dr. Peter Thomson

Hello –

You are invited to participate in this research project “A Survey of Anticoagulant (Warfarin & LMWH) Periprocedural Management for Those with Mechanical Heart Valves” (Pro0016149). Your participation is greatly appreciated, please click on the following link to complete the survey: https://redcap.link/periopmechanicalvalves 

The survey will take ~ 10 minutes to complete. 

Thank you for your consideration. If you have questions, please contact Dr. Tammy Bungard at tammy.bungard@ualberta.ca.

Co-Investigators: Dr. Ava Azhir, Dr. Cynthia Brocklebank, Dr. James Douketis, Dr. Darcy Lamb, Dr. Jennifer Lowerison, Dr. Peter Thomson

Dear colleagues,

The ISTH SSC on Fibrinogen and FXIII is launching an international cohort study on afibrinogenemia, focusing on rare but clinically significant complications, particularly thrombosis.

Afibrinogenemia is an ultra-rare disorder with highly variable clinical expression. While bleeding manifestations are well recognized, thrombotic events remain insufficiently characterized and poorly understood. This study aims to collect standardized clinical data to better define the frequency, triggers, management, and outcomes of thrombotic and severe bleeding complications.

The survey is concise and takes only a few minutes per patient. No protected health information should be included.

We warmly invite colleagues caring for patients with confirmed afibrinogenemia to contribute cases and support this collaborative international effort.

Thank you for your participation.

For additional information, please contact Alessandro.casini@hug.ch

Dear Health Care Practitioner,

Background

The peri-procedural management of direct oral anticoagulants (DOACs) in persons with cancer (PWC) undergoing tunneled or port central venous catheter (CVC) insertion is a common but understudied clinical problem, with conflicting management advice from guidelines and resultant uncertainty for best practices. Data from prospective studies assessing peri-procedural DOAC management exist; however, these data pertain to procedures in the general population. These management strategies may not be applicable to PWC because (1) although CVC insertion is a low risk, image-guided specialized procedure, (2) PWC are at considerably higher risk of peri-procedural bleeding and thrombosis than non-PWC. It is not surprising, therefore, that guideline recommendations and current practices vary widely. We propose a survey of health care practitioners to gauge their practices and comfort regarding peri-procedural DOAC management for CVC insertion in PWC.

We are designing an investigator initiated randomized controlled trial comparing continued to interrupted DOAC for CVC insertion in PWC. We are asking for your input through this survey to better understand current practices of peri-procedural DOAC management for CVC insertion in PWC and help guide trial design.

You are invited to take part in this study survey because you are a health care practitioner that is involved in peri-procedural anticoagulation and/or CVC insertion. 

Survey

This study will look at your current practices of peri-procedural DOAC management for CVC insertion in PWC and your thoughts on a clinical trial comparing continued to interrupted DOAC for CVC insertion in PWC. The aim of this research is to gain insight into current practices and help design a clinical trial.

Your participation in this survey is completely voluntary.

If you agree to participate, you will be asked to complete an online survey. The survey is 14 to 18 questions long, and is estimated to take no longer than 10 minutes to complete. The survey includes questions about:

·       your professional background information such as your profession and type of practice

·       your practice of peri-procedural DOAC management for CVC insertion in PWC

·       your opinions on a clinical trial comparing continued to interrupted DOAC for CVC insertion in PWC

Your responses will be submitted anonymously through the survey, and no personal data will be collected.

There are no anticipated risks in participating in this study.

While there is no direct benefit to you, your input will help inform the design of an important clinical trial in cancer-related anticoagulation. 

Participants will not be named or identified in any study reports, publications, or presentations that may come from this study. Also, once the data is collected we will not be able to withdraw the data from the study.

You will not be paid for taking part in this study. 

Questions

If you have any questions, concerns or would like to speak to the study team for any reason, please contact Jameel Abdulrehman at Jameel.Abdulrehman@uhn.ca.

Please note that communication via e-mail is not absolutely secure. Thus, please do not communicate personal sensitive information via e-mail. 

If you have any questions about your rights as a research participant or have concerns about this study, call the Chair of the University Health Network Research Ethics Board (UHN REB) or the Research Ethics office number at 416-581-7849. The REB is a group of people who oversee the ethical conduct of research studies. The UHN REB is not part of the study team. Everything that you discuss will be kept confidential. 

By completing and submitting this online survey, you consent to participate in this study and your responses will be used solely for research purposes.

Thank you for your help with this endeavor.

Jameel Abdulrehman, MD, MSc, FRCPC, University of Toronto  

Joseph Shaw, MD, MSc, FRCPC, DRCPSC
University of Ottawa

Steffan Stella, MD, ScD, McMaster University

Sebastian Mafeld, MBBS, FRCR, University of Toronto

James Douketis, MD, FRCPC, McMaster University 

Rita Selby, MBBS, FRCPC, MSc, University of Toronto

Peter Gross, MD, MSc, FRCPC, University of Toronto                                           

Marc Carrier, MD, MSc, FRCPC, University of Ottawa

Dear colleagues,

Chimeric antigen receptor (CAR) T-cell therapy has significantly improved outcomes in patients with relapsed/refractory aggressive large B-cell lymphoma (R/R LBCL) and R/R multiple myeloma, and is rapidly being introduced to other disease fields. 

Thrombosis and bleeding complications are increasingly reported in patients undergoing CAR T-cell therapy, affecting an estimated 10–20% of patients. However, their incidence and risk factors remain unclear, also due to heterogeneity between reporting studies and missing data, causing these complications to remain under-recognized and poorly understood.

Current supportive care practices are largely extrapolated from stem cell transplant populations, despite CAR T-cell therapy’s distinct pathophysiology, and there is no consensus on optimal monitoring intervals, transfusion thresholds, or preventive interventions. 

Hence, to gain a better understanding of current practices in supportive care management for CAR T-cell patients, particularly in the hemostasis-related monitoring and supportive care, as well as how complications of thrombosis and bleeding in patients receiving CAR T-cell therapy are documented, we please ask you to complete the following survey: https://redcap.link/support_CART

Please feel free to distribute this survey among colleagues involved in CAR T-cell therapy, hemostasis and thrombosis, and/or transfusion medicine.

Thank you in advance for your contributions and collaboration.

On behalf of the ISTH SSC Cancer-associated thrombosis and hemostasis and EHA SWG on Transfusion,

Mandy Lauw, Darko Antic, Lizzie Jutchinson, Kirsty Sharplin, Simon Stanworth

Dear participant,

This survey addresses current issues and challenges related to blood-contacting medical devices, assessing methodologies for the experimental evaluation of blood-contacting biomaterials under flow conditions. The aim is to develop robust, evidence-based standards that will support improved biomaterials and device design and accelerate safe and effective clinical translation.

Your contributions are essential for advancing our collective understanding of medical device-associated thrombosis and informing best practices in thrombogenicity testing that will strengthen innovation and patient outcomes across the field.

Survey link: https://redcap.isth.org/surveys/?s=RECEKKNLWEJNYARA

Per the Guidelines and Guidance (G&G) Committee process for guidance manuscripts, draft manuscripts go through a public comment period and G&G Committee review and approval before submitting the manuscript to the Journal of Thrombosis and Haemostasis (JTH).

The G&G Committee would like to announce that the guidance manuscript titled, " The Diagnosis and Evaluation of Women and Girls with Hemophilia and Hemophilia Carriers: Guidance from the SSC of the ISTH," is now open for public comment. Note: This manuscript is confidential and in draft form.

Please click here to submit your comments by Thursday, February 19, 2026.

Per the Guidelines and Guidance (G&G) Committee process for guidance manuscripts, draft manuscripts go through a public comment period and G&G Committee review and approval before submitting the manuscript to the Journal of Thrombosis and Haemostasis (JTH).

The G&G Committee would like to announce that the guidance manuscript titled, " The Diagnosis and Evaluation of Women and Girls with Hemophilia and Hemophilia Carriers: Guidance from the SSC of the ISTH," is now open for public comment. Note: This manuscript is confidential and in draft form.

Please click here to submit your comments by Thursday, February 19, 2026.

Per the Guidelines and Guidance (G&G) Committee process for guidance manuscripts, draft manuscripts go through a public comment period and G&G Committee review and approval before submitting the manuscript to the Journal of Thrombosis and Haemostasis (JTH).

The G&G Committee would like to announce that the guidance manuscript titled, " The Diagnosis and Evaluation of Women and Girls with Hemophilia and Hemophilia Carriers: Guidance from the SSC of the ISTH," is now open for public comment. Note: This manuscript is confidential and in draft form.

Please click here to submit your comments by Thursday, February 19, 2026.

Per the Guidelines and Guidance (G&G) Committee process for guidance manuscripts, draft manuscripts go through a public comment period and G&G Committee review and approval before submitting the manuscript to the Journal of Thrombosis and Haemostasis (JTH).

The G&G Committee would like to announce that the guidance manuscript titled, " Management of Thrombotic Risk Associated with Endocrine and Other Systemic Therapy in Patients with Breast Cancer: Guidance from the SSC of the ISTH," is now open for public comment. Note: This manuscript is confidential and in draft form.

Please click here to submit your comments by Thursday, February 19, 2026.

Save the Date:

An Educational Day on Pediatric Hemostasis and Thrombotic Disorders will be held on Friday, July 10, 2026, ahead of the ISTH Annual Congress in Paris. You may find the program agenda below.

This educational initiative is being conducted in coordination with the French Society on Thrombosis and Hemostasis(Club des Pédiatres en Hémostase – Société Française de Thrombose et d'Hémostase [SFTH]), the International Pediatric Thrombosis Network (IPTN), and the Pediatric and Neonatal Subcommittee of the SSC of the ISTH. The program will focus on contemporary topics in pediatric bleeding and thrombotic disorders and is intentionally designed to complement, and not duplicate, the Pediatric/Neonatal SSC scientific session.

We look forward to your future participation.

With best regards,
Madhvi

Dear Colleagues,

On behalf of the Hemostasis Working Party of the Pediatric/Neonatal Thrombosis and Haemostasis Subcommittee, we are pleased to invite your center to participate in a collaborative research initiative entitled “International Registry of Dengue Infection in Congenital Bleeding Disorders (DengueCBDR).” This study has been approved by the International Society on Thrombosis and Haemostasis.

Patients with congenital bleeding disorders are at increased risk of bleeding complications during dengue virus infection due to thrombocytopenia, platelet dysfunction, vascular leakage, and coagulopathy. Despite the clinical importance of this issue, there is currently a lack of comprehensive international registry data addressing bleeding manifestations, management strategies, and outcomes in this vulnerable population.

The primary objective of this study is to evaluate bleeding complications, management approaches, clinical outcomes, and associated complications in patients with congenital bleeding disorders—such as hemophilia, von Willebrand disease, and platelet disorders—who are affected by dengue infection. Your participation would make a valuable contribution to improving the understanding and management of bleeding in this clinical context.

 To facilitate data collection, the study group has developed a REDCap-based electronic data capture system for patient registration. The full study proposal in English is available upon request for centers interested in participating.

Should you require further information or wish to express interest in joining this international registry, please contact Nongnuch.sir@mahidol.ac.th. or fill in your contact information https://docs.google.com/forms/d/e/1FAIpQLSdY8BM1O5nTQHJoSuW-Knm_EXBSaer5oh34JuuSNhLTqvrSUw/viewform?usp=header

We would be honored to collaborate with your institution on this important initiative.

Yours sincerely,

Nongnuch Sirachainan MD

On behalf of the Hemostasis Working Party

Pediatric/Neonatal Thrombosis and Haemostasis Subcommittee