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ISTH REDCap
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REDCap is a mature, secure web application for building and managing online surveys and databases. The ISTH installation of REDCap supports the ongoing efforts of ISTH Member projects and the Scientific and Standardization Committee Subcommittees' projects.


The ISTH REDCap platform can be accessed at redcap.isth.org. Members that wish to use the REDCap installation should contact education@isth.org.


Please view current available studies here:


  • Physicians' Knowledge and Practices of Management of COVID-19 Coagulopathies in Pregnancy
  • The SSC for Women’s Health Issues in Thrombosis and Hemostasis has developed this survey to examine physicians’ knowledge, experiences and current management practices with respect to COVID-19 in pregnancy, particularly the use of laboratory biomarker(s) for diagnosis or clinical monitoring as well as thromboprophylaxis. The survey will provide insights on clinician-use of anticoagulation in COVID-19 pregnancy and factors that motivate anticoagulant choice, as well as highlight any inconsistencies in the management approach. This information can then be used to guide future studies and/or recommendations. All physicians worldwide who manage obstetric patients are invited to participate.
  • International Registry on Pregnancy and COVID-19 Associated Coagulopathy (COV-PREG-COAG)
  • The extent and frequency of coagulation abnormalities in COVID-19 during pregnancy are currently unknown. The impact on fetal and maternal outcomes and the use and safety of antiviral therapies LMWH, corticosteroids in the context of COVID-19 and pregnancy are also unknown. The SSC for Women’s Health Issues in Thrombosis and Hemostasis developed this registry with the following objectives: To examine coagulopathy and VTE events in COVID-19 affected pregnancies and their potential link to disease severity, assess effects of COVID-19 related coagulopathy on maternal and fetal/neonatal outcomes, study the hemostatic parameters in women with COVID-19, during each trimester of pregnancy and the postpartum period, and evaluate the use/effects of therapies such as LMWH, Steroids for acceleration of fetal lung maturity, antibiotics, and antivirals.
  • Management of Women With Type 2B von Willebrand Disease During Pregnancy and Postpartum Registry
    Type 2B VWD accounts for about 5% of all cases of von Willebrand disease (VWD).  Management of women with type 2B VWD during pregnancy or postpartum is clinically challenging due to dysfunctional VWF whose physiological increase in plasma during pregnancy may exacerbate thrombocytopenia. The management of acute bleeding complications and monitoring, delivery methods, anaesthesia and the best approach for substitution therapy in women with type 2B von Willebrand disease during delivery and postpartum require more guidance. The SSC for Women’s Health Issues in Thrombosis and Hemostasis developed this registry with an objective to gather details on the management practices and outcomes of type 2B VWD during pregnancy and postpartum. The study population include pregnant women who met diagnostic criteria for type 2B VWD. Data from this study will help generate an ISTH guidance document for better care of these patients. 

  • WITEAM Study on Placenta-Mediated Pregnancy Complications and Thrombophilia
    The Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee, supports the 
    WiTEAM; an observational non-interventional study to register women with placenta-mediated pregnancy complications (PMC) and thrombophilia. The goals of this study are to evaluate the routine management practice, to collect data on safety and to describe the current maternal and fetal issues related to these complications. This will be achieved via routine clinical follow up from the start date of the pregnancy till and including 3 months after delivery. The registry is based on a series of demographic, clinical and laboratory data. Clinicians from all over the world (hematologists or other specialists), who in their usual clinical practice may treat women with thrombotic gestational complications, can participate. Data from this study will help evaluate and better guide practice.
     
  • Current Apporach to DIC and Sepsis
    This study aims to generate insights in the physician’s approach to the diagnosis and treatment of Disseminated Intravascular Coagulation (DIC).

  • DIC and Obstetrics
  • Disseminated intravascular coagulation (DIC) is a serious obstetric complication that contributes to increased maternal morbidity and mortality. The rate and etiology of DIC during pregnancy vary globally. There are only a few publications that provide an international or global perspective to the prevalence and diagnosis and management. The diagnosis is mostly based on the clinical impression of the attending physician, and loosely on some laboratory tests and there is a considerable controversy among clinicians with an overlap at times, with obstetrical hemorrhage. Therefore, the Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee developed this registry to gather data on the various approaches to the diagnosis and treatment of DIC during pregnancy. If you have diagnosed or managed a case of DIC during pregnancy, labour, or immediate post-partum period you are invited to fill in this data collection form. Data from this study will help better understand the definitions, clinical presentations and guide to better diagnosis and management. 
  • Pregnancy During DOAC Use
    The Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee supports this registry with the goal to assess the effects of exposure to DOACs in utero on the fetus and the child on the long-term. It is a multicenter, international, observational cohort study, and the registry is designed to collect both retrospective and prospective data. Eligibility criteria for enrollment are women with 1) confirmed use of a DOAC, and 2) a confirmed pregnancy during DOAC use. Please contact Ingrid Bistervels if you are interested in participating.
  • Outcomes of Stents in Patients with Venous Thrombosis
  • There is uncertainty as to the antithrombotic management of patients with extensive lower limb DVT who have venous stents. As a first step towards defining best practices, the SSC Control of Anticoagulation Subcommittee is developing an international patient registry to determine anticoagulant and antiplatelet management practices and outcomes in stented patients with extensive lower limb DVT. In light of recently completed and ongoing RCTs evaluating pharmacomechanical thrombolysis for the treatment of extensive DVT, we believe this registry is relevant and timely.

    Diagnostic tests for heparin-induced thrombocytopenia (HIT) are associated with important drawbacks and many authors consider current diagnostic approaches to be inadequate in clinical practice. The aim of the present study is to develop a clinical prediction rule for the diagnosis of HIT. We will include 750 patients with suspected HIT. Our evaluation study will seek to establish that the diagnosis of HIT can be accurately predicted in individual patients at the bedside. Participation in this study not only helps improving care in patients with suspected HIT, but associates institutions with current concepts of diagnostic procedures. We invite all colleagues caring for patients with suspected HIT to evaluate feasibility of implementation at their institution and become a member of our study group.

    • International Registry on the Symptomatic Hemophilia A/B Carriers: The Pink Color of Hemophilia
      Women, symptomatic carriers of hemophilia are rare, but they have a quality of life overlapping that of affected males, they have the same symptoms and the same needs. Until now there are no registries or studies that consider all the aspects that distinguish the status of "carrier". The aims of our international Registry are to evaluate the real incidence of the symptomatic carriers of hemophilia A and B in the world population, the assessment of their Quality of Life (QoL) through appropriate scores, and the evaluation of the subsequent clinical outcomes.

     The primary aim is to assess the current diagnostic and therapeutic approaches for DIC in ICU, in   particular for sepsis-associated DIC. 

     To gather experience on the outcome of pregnancy, birth defects in neonates, and late effects in children of mothers who unintendedly have been pregnant while being exposed to DOACs.

    • Examining Current Practices in the Care of Pregnant Women With Low Von Willebrand Factor / Von Willebrand Disease

      The Von Willebrand Factor SSC Subcommittee, in collaboration with the Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee, have developed a structured and comprehensive questionnaire to determine current international clinical practice in the management of pregnant women with Von Willebrand Disease. Analysis of the survey responses will provide an insight into the current clinical practices, treatment thresholds, definitions of and monitoring strategies for postpartum hemorrhage in women with Von Willebrand Disease. The data from this survey will assist in identifying the key areas of variance internationally among health care providers in this field.

    The Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee supports this study which aims to investigate the obstetric and family history of mothers who have given birth to children with Severe Congenital Protein C Deficiency (SCPCD). The aims of the study are to determine the incidence of pregnancy complications (e.g. previous history of miscarriage, intrauterine fetal death, or previous neonatal death) if any and to record any family history of thromboembolic events in both parents.

    We are collecting data from ISTH members who take care of cancer patients who are on concurrent targeted cancer therapy and direct oral anticoagulants (DOACs), as both are increasingly used in the cancer population and the safety of combined use is unclear. An ISTH international registry has been designed to investigate this issue. This is an observational registry, for patients between age 18-89 who has active malignancy taking one of the selected oral targeted cancer therapies and concurrent DOACs. Patient data will be entered into an on-line redcap database at two time points, at the time of start of concurrent use and outcomes after 6 months.  We aim for a sample size of 100 for patients on DOAC for VTE and 100 with atrial fibrillation. Centers will be compensated for 100 US dollars per patient after data are entered for both time points, as an appreciation for your time and work.   

    • Thromboysis and Invasive Treatments for Massive Pregnancy-related Pulmonary Embolism: The MAPP Regsitry
      Pulmonary embolism (PE) a rare occurrence in pregnancies. Its most severe manifestation, a hemodynamically unstable “massive” PE, is a common cause of maternal mortality in Europe and North America, but its treatment options are guided by very scarce data. The Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee developed MAPP Registry to explore the maternal effectiveness and maternal/obstetrical/neonatal safety of thrombolysis, mechanical thrombectomy or ECMO for massive PE during pregnancy and the 6 weeks postpartum. Care providers worldwide are invited to report cases of objectively diagnosed massive pregnancy-related PE in this online registry, with their administered treatments and maternal, obstetrical and neonatal outcomes. Data from this study will better inform treatment decisions in patients with pregnancy related massive PE.
    • Obstetrics and Gynaecological Outcomes of Women with Platelet Function Disorders
      The presentations and management of women with platelet function disorders (PFDs) or platelet dysfunction in the obstetrics and gynaecology settings can be variable. There is limited clinical experience in this area due to the rarity and the diversity of these disorders. In the literature, most information is scattered in case reports and small case series. The Women’s Health Issues in Thrombosis and Hemostasis SSC Subcommittee developed this registry to collect on the gynaecological and obstetrical presentations, management course and outcomes. Data can be collected from women diagnosed with PFDs (syndromic and non-syndromic) from age of menarche onwards. Clinicians who have female patients with PFDs and obstetrics/gynaecological complaints or concerns are encouraged to participate. Data from his project will improve guidance of management of women with this heterogeneous group of diseases.  

    • Anticoagulation Reversal in Pediatric Population Survey
      Vitamin K antagonists (VKA) such as warfarin, have been the main stay of oral anticoagulation (OAC) in pediatrics for a variety of therapeutic and prophylactic indications. However, the off label use of direct oral anticoagulants (DOACs) is on the rise within the pediatric population. Bleeding is a serious side effect of VKA and DOACs. There are many options for OAC reversal, however, there are no specific guidelines in pediatrics. This questionnaire is being conducting to survey the range of strategies used for oral anticoagulants reversal in pediatric in children. 
    • Immunotherapy ITP Survey
      Immune thrombocytopenia is a rare but sometimes serious complication of immunotherapy, introducing the risk of life-threatening bleeding, as well as interrupting treatment options in otherwise poorly controlled diseases. Clinicians are often forced to make decisions regarding treatment without evidence to guide them, and treating this phenomenon as one might treat primary or pediatric ITP. This survey hopes to describe the current state of play regarding the management of this complication of immunotherapy across the membership of the ISTH by identifying the gaps in our knowledge regarding successful treatment strategies, inform clinical practice across jurisdictions with varying exposure to and experience with these novel therapies, and guide future research directions and collaborations.
    • International registry on the use of the DOACs for the treatment of unusual site VTE
    • The aim of this study is to evaluate the rationale for the use of the direct oral anticoagulants (DOACs) for the treatment of unusual site venous thromboembolism (VTE) in real life clinical practice, and to assess the safety and effectiveness of this approach. It is a multicenter, international, observational study of patients with objective diagnosis of thrombosis in unusual sites (i.e. with the exclusion of thrombosis of the upper limbs, lower limbs and pulmonary arteries) treated with one of the DOACs. We are collecting information on timing of initiation of the DOAC, reasons for starting/switching to the DOAC, occurrence of thrombotic events, major bleeding, and mortality during follow up. A minimum follow up of 6 months (maximum 12 months) is requested for each patient. If you are interested in participating, please contact Dr. Nicoletta Riva nico.riva@hotmail.it 
    • PUP-SWITCH
      PUP-SWITCH is an observational cohort study, targeting severe hemophilia A patients who have received FVIII replacement therapy. This study aims to make use of pre-existing data in order to evaluate the risk upon switching from the use of plasma-derived FVIII (pdFVIII) concentrates to the use of recombinant FVIII (rFVIII) products, after the period of higher risk for inhibitor occurrence has passed.
    • The Thromb-PED Registry (IPTN)
      The Throm-PED registry is a prospective disease-based registry, which is developed by the International Pediatric Thrombosis Network. This registry enables international research collaboration to improve the quality of care of pediatric patients with thrombosis worldwide. By systemically and prospectively collecting patient data, the Throm-PED registry can be used for many purposes, including understanding the natural history of certain types of pediatric thromboembolism (TE), identifying risk factors and groups at high risk for TE, understanding diagnostic methods, and monitoring clinical effectiveness, safety and cost effectiveness of anticoagulant drugs in all types of TE. Moreover, the Throm-PED registry will provide an important complement to the data of the new drug trials, as they are able to evaluate the effects of interventions in real-world settings and may collect additional effectiveness data, including patient-reported outcomes, for example, quality of life assessments. In addition, this registry is a powerful tool to evaluate long-term clinical outcomes, especially in rare types of TE, and the effects of thrombotic events and its treatment on growth and development. Furthermore, the international character of the Throm-PED registry will enable examination of geographic variations in disease etiology and treatment patterns and provide country-specific information of new drugs. 
    • Catheter-related Arterial Thrombosis in Children Survey
      Arterial thrombosis is very rare in children. Most of these thrombotic events are catheter-related and occur in neonates and young infants. Due to the rarity of this complication, management is unknown and varies among centers. The aim of this survey is to gather information on the current practice(s) of the management of catheter-related arterial thrombosis in neonates and children. This survey has been endorsed by the International Pediatric Thrombosis Network (IPTN). With the results of this survey, we would like to develop a prospective study.

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