ISTH 2019 The International Society on Thrombosis and Haemostasis Scientific and Standardization Committee (SSC) Meeting
July 6-10, 2019. Melbourne, Australia
MoreNational Hemophilia Foundation 2018
70th NHF Bleeding Disorders Conference. Oct 11-13, 2018. Orlando, FL.
MoreCHOICE Study illustrates that Person with Inhibitors (PWI) have a more bleeding and joint issues
Improvement is needed in treatment and disease management for this population
MoreStudy shows there no difference between patients and siblings on social and emotional functioning, but decreased school-related function in patients with bleeding disorders
Findings demonstrate resiliency and identify specific areas of difficulty related to school and social functioning among youth with bleeding disorders.
MoreAssessment of Health Literacy & Numeracy in Adolescences with Hemophilia A & B may indicate the need for formal testing
Pilot study findings could impact how HTCs should educate patients on disease interventions
MoreAppropriate disease and treatment knowledge is important in preparing adolescents with hemophilia for transition to adult care.
Improved tailored communication between HTC staff and patients fosters medical independence
MoreSexual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study
Older age, joint bleeding and joint status are related to poor sexual health in persons with Hemophilia
MoreBurden of Comorbid Diseases in Patients with Hemophilia:
Survey shows that persons with hemophilia more frequently report hypertension and gingivitis
MoreUnderstanding Treatment and Care Utilization & Perceptions of Females with Hemophilia A or B in the CHOICE Project
Survey shows Females with Hemophilia (FWH) aged 18-34 years have lowest satifaction with their hemophilia care
MoreMortality Trends and Causes of Death in Persons with Hemophilia in the United States, 1999-2014
Hemophilia related death rate significantly decreased over time and highlights the need for monitoring trends in morbidities related to aging
MoreThe Relationship of Joint Range of Motion to Factor Activity in Patients with Hemophilia without Prophylaxis: A Longitudinal Assessment of the CDC-UDC Dataset
Factor activity levels have far greater effect on ROM loss than any other patient characteristic
MoreBleeding Events and Obstetric Complications of Pregnancy in Hospitalized Patients with Hemophilia: Results from Nationwide Inpatient Sample Database 2003-2011
Study examines Bleeding and Obstetric Complications of Pregnancy in Hospitalized Women with Congenital Hemophilia
MoreThrombosis and Hemostasis Societies of North America
The Thrombosis & Hemostasis Societies of North America (THSNA) will be held on March 8-10, 2018 in San Diego, CA.
MoreDo US Patients and Clinicians View “Portability Features” as Meaningful FVIII product attributes: Results of a conjoint analysis
Implications on selection of a FVIII treatment product
MoreAmerican Society of Pediatric Hematology/Oncology
The American Society of Pediatric Hematology/Oncology (ASPHO) will be held May 2-5, 2018 in Pittsburgh, PA.
MorePT experts quantify the risk of bleeding associated with a specific activity and factors to decrease risk
Results from the Activity-Intensity-Risk (AIR) Survey and Consensus Meeting of US Physical Therapists were presented in a poster at the annual National Hemophilia Foundation (NHF) meeting.
MorePrevalence of obese or at risk individuals in the hemophilia population is now more than 50%
Obesity in the hemophilia community has several negative effects
MoreGross motor testing is recommended as part of the annual physical therapy evaluation for patients with hemophilia
In a poster presented at the annual NHF meeting, the authors looked at whether or not gross motor delays may be missed during the annual physical therapy evaluation of young boys with hemophilia.
MoreStudy explores why only some women seek evaluation regarding their hemophilia carrier status
Individuals with a family history of severe hemophilia demonstrated higher levels of knowledge for hemophilia inheritance and bleeding risks to carriers.
MoreA large US insurance claims database suggests a delay in diagnosis and therapeutic intervention in Women and Girls with Hemophilia (WGH)
The median age of WGH diagnosis and factor therapy initiation was 35 and 37 years old
MoreInternational Society for Laboratory Hematology
ISLH 2018, the XXXIst International Symposium on Technological Innovations in Laboratory Hematology will be held May 10-12, 2018 in Brussels, Belgium at the SQUARE Meeting Centre
MoreInternational Society for Pharmacoeconomics and Outcomes Research
The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) will be held on May 19-23, 2018 in Baltimore, MD
MoreAssociation of Pediatric Hematology/Oncology Nurses
The 42nd Annual Conference of the Association of Pediatric Hematology/Oncology Nurses (APHON) will be held September 13-15, 2018, at the Savannah International Trade & Convention Center, Savannah, GA.
MoreVariation in symptoms between hemophilia A carriers during labor and after delivery can lead to different clinical presentations requiring individualized management
There needs to be increased awareness about the challenges Hemophilia carriers A can potentially experience during labor and after delivery
MorePhysical Activity in Adults with Hemophilic Arthropathy
Adult patients with hemophilia on prophylaxis in Spain were able to walk about 10,000 steps a day without risk of bleeding.
MoreImpact of Obesity on Dosing of Hemophilia Products
Obesity may impact factor dosing in patients with hemophilia.
MoreReports of Joint Outcomes in Hemophilia Patients
Joint Outcomes in United States (US) Hemophilia Patients: a report of the Community Counts Registry
MoreUnderstanding FXIII Deficiencies
Women with congenital FXIII deficiency need to be carefully monitored during pregnancy.
MoreB-HERO-S Study Highlights Psychosocial Issues in Men and Women with Hemophilia B
B-HERO-S Study reports on the impact of Hemophilia B on men and women with Hemophilia B on education, work and activities.
MoreB-HERO-S Study Highlights Psychosocial Issues in Boys and Girls with Mild-Severe Hemophilia B
B-HERO-S Study reports on the psychosocial impact of Hemophilia B on affected boys and girls and their families.
MoreUnderstanding Half-Life: What does it really mean?
NHF (Orlando, July 21-23): Sue Geraghty led an interactive session at the National Hemophilia Foundation’s Annual Meeting to try to explain to patients and caregivers what exactly half-life means and how it differs between patients and products.
MoreNHF-MASAC Group Focused on Pain Evaluation and Management
NHF (Orlando, July 21-23): The NHF-MASAC Pain Working Group hosted an interactive session for patients and caregivers at NHF's Annual Meeting focusing on how pain is evaluated and managed at hemophilia treatment centers.
MoreOne in a Million Rare Bleeding Disorders
NHF (Orlando, July 21-23): Dr. Erin Cockrell from Tampa led a very interactive session at the National Hemophilia Foundation’s annual meeting for patients and families with rare bleeding disorders.
MoreEmbracing you Inner Geezer
NHF (Orlando, July 21-23): Dr Barbara Konkle of Bloodworks NW and Dr. Bruce Hough of St. Joseph’s Children’s Hospital discussed haemophilia care in the aging population including issues of cardiovascular disease, hepatitis C, and liver cancer
MoreUpdate on Blood Safety and Zika
NHF (Orlando, July 21-23): Mark Skinner, Nathan Schaefer and Mary Gustafson provided an update at the annual National Hemophilia Foundation meeting around blood safety in response to current dialogue in the community around Zika.
MoreMaking Progress for Women with Bleeding Disorders
NHF Session Highlights Issues and Shares Resources for Women with Bleeding Disorders
MorePatients with Noonan Syndrome May Have One or More Bleeding Disorders
ASPHO 2016 (Minneapolis, May 11-14) Patients with Noonan syndrome (NS) may have one or more bleeding disorders according to a comprehensive review presented at the recent 2016 American Society of Pediatric Hematology Oncology annual meeting.
MoreBleeding Symptoms In Women With Hemophilia A or B
THSNA 2016 (Chicago, April 14-16): Issues around bleeding symptoms in women with factor VIII or IX deficiency and carriers of hemophilia A and B were discussed during a plenary session
MoreCDC Data Shows PWH Living Longer
THSNA 2016 (Chicago, April 14-16): The Centers for Disease Control and Prevention (CDC) has been monitoring causes of death and ages of hemophilia patients for decades
MoreSurgical Procedures Influenced by Age, Severity, Bleed Frequency, Prophylaxis Use
THSNA 2016 (Chicago, April 14-16): Given the frequency of joints as a site of bleeding in patients with congenital hemophilia, it is not surprising that some patients ultimately need some invasive or surgical procedure on their joints as they age.
MoreATHN-3 Radiosynovectomy Study
THSNA 2016 (Chicago, April 14-16): One way of treating overgrowth of the synovial lining of joints in patients with hemophilia due to joint bleeding is by injecting a radioisotope into the joint space, called radiosynovectomy.
MoreUCSF HTC Survey on Intimacy Issues
THSNA 2016 (Chicago, April 14-16): The treatment team at UCSF’s HTC presented results of a survey of their adults at the Thrombosis and Hemostasis Summit of North America (THSNA) in a poster.
MoreP-FIQ Study Highlights Pain Issues in PWH
THSNA 2016 (Chicago, April 14-16): Recent data from the Pain, Functional Impairment and Quality of Life (P-FIQ) study presented at the Thrombosis and Hemostasis Summit of North America (THSNA) highlight specific issues around acute and chronic pain.
MoreLaboratory Testing of Inhibitors
THSNA 2016 (Chicago, April 14-16): Factor replacement can be complicated by the development of antibodies that block or neutralize the activity of replacement factor, so called “inhibitors”.
MoreThe CHOICE Project
HFA Symposium (Las Vegas, April 2, 2016) CHOICE was a projected sponsored by the Centers for Disease Control and Prevention (CDC) to try to assess care and needs of patients treated in non-HTC settings
MoreZika Virus Updates
HFA Symposium (Las Vegas, April 2, 2016) While Zika is a viral disease transmitted by mosquito bite, Soucie said most people won’t know they have it as they don’t show symptoms; those that show symptoms have mild symptoms lasting for weeks.
MoreInhibitor Focus
HFA Symposium (Las Vegas, April 2, 2016) The HFA Symposium featured an inhibitor track that kept inhibitors in focus throughout the meeting
MoreDear Addy: A Session to "Ask The Experts"
HFA Symposium (Las Vegas, April 1, 2016) Attendees at the HFA Symposium asked a panel of experts (live and by Twitter) about advocacy, policy, insurance and much more.
MoreImproving the Lives of Women with Blood Disorders
ASH 2015 (Orlando, December 5-8) New and upcoming technologies play an important role to improve the lives of women with blood disorders.
MoreThe Effect of Joint Disease on Pain and Functional Impairment
ASH 2015 (Orlando, December 5-8) The Pain, Functional Impairment, and Quality of Life (P-FiQ) study was designed to measure the impact of pain and functional impairment on quality of life (QoL) in adult patients with hemophilia.
MoreNumeracy in Patients with Hemophilia
ASH 2015 (Orlando, December 5-8) Patients with hemophilia are often exposed to various mathematical concepts throughout their life in relation to treatment, including for example factor levels, bleeding rates, likelihood of developing an inhibitor
MoreThe SIPPET Study
ASH 2015 (Orlando, December 5-8) The global SIPPET study took place between January 2010 and December 2014 with information collected on 251 previous untreated patients (PUPs) less than 6 years of age with severe hemophilia A.
MoreEvaluating Cardiovascular Risks Factors in the Hemophilia Population
ASH 2015 (Orlando, December 5-8) In recent times, it has been shown that cardiovascular events do occur in men with hemophilia; however a new study shows the rate is indeed lower than the general population.
MoreUltrasound Imaging Review
ASH 2015 (Orlando, December 5-8) A study was conducted to evaluate the evidence on the value of ultrasound (US) for the assessment of joint disease related to hemophilia in affected children and adults.
MoreRole of Managed Care and Specialty Pharmacy in Treatment of Hemophilia Patients
NHF 2015 (Dallas, August 13-15) Individualized treatment for patients with hemophilia is very important. Many groups including health care professionals (HCPs), payers and specialty pharmacies are involved in providing care.
MoreBasics of Clinical Trials
NHF 2015 (Dallas, August 13-15) Clinical trials are research studies that evaluate whether a drug (treatment) is safe and effective for humans.
MoreDistinguishing between Signs of a Bleeding Disorder and Abuse
NHF 2015 (Dallas, August 13-15) Healthcare professionals are suggesting that guidelines should be developed to compare the frequency of intracranial hemorrhages and bleeding patterns in a particular bleeding disorder to a patient’s presentation.
MoreWomen with Bleeding Disorders
NHF 2015 (Dallas, August 13-15) The most common bleeding disorder in women and girls is von Willebrand disease, an inherited disorder that is caused by a defect or deficiency in von Willebrand factor, a protein the blood needs for clotting
MoreBalance Dysfunction and Falls Risks
NHF 2015 (Dallas, August 13-15) Since people with hemophilia are gradually entering the 65 and over age group, it is very important to be screened for fall risks and to be educated on preventing falls.
MoreHemophilia and the Aging Community
NHF 2015 (Dallas, August 13-15) As more hemophilia patients are living longer, they are beginning to develop various conditions that are associated with aging such as cardiovascular disease and falls leading to fractures
MoreTelemedicine: What is it and how is it useful to me?
NHF 2015 (Dallas, August 13-15) So, next time when you are worried about not being able to make it to your health appointment, remember to ask your healthcare provider about telemedicine
MoreWhat is Half-Life and Why Do I Need to Understand It?
NHF 2015 (Dallas, August 13-15) The concept of half-life is important to understand because it determines the dosing schedule of a drug.
MoreCharacteristics of Factor IX Deficiency
ISTH 2015 (Toronto, June 20-25) Some studies in the past have reported that Hemophilia B patients use lower amounts of factor, use prophylaxis less often, have less hospital admissions, and less joint disease
MoreImpact of Pain and Functional Impairment In US Adult People with Hemophilia (PWH)
ISTH 2015 (Toronto, June 20-25) Pain and its impact on daily activities and quality of life were noted in each patient-reported outcome with 43.3% reporting having experienced moderate/severe/extreme pain or discomfort.
MoreChildren with Hemophilia (CWH) in the United States
ISTH 2015 (Toronto, June 20-25) A pilot test suggests caregiver burden for hemophilia is greater among those whose child ever had inhibitors.
MoreThe INSIGHT (International Study on Etiology of Inhibitors in Patients with a Moderate or Mild Form of Hemophilia A, Influences of Immuno-Genetic & Hemophilia Treatment Factor) Study
ISTH 2015 (Toronto, June 20-25) The INSIGHT study showed that blood group O was a predictor of factor VIII levels and was associated with higher risk of bleeding in people with hemophilia complications.
MoreThe Effect of Factor Activity Levels and Bleeding Characteristics
ISTH 2015 (Toronto, June 20-25) Analysis of data from US patients with mild and moderate hemophilia suggests that bleeding can occur with baseline factor activity levels, but may be slightly more common in mild/moderate hemophilia A than B.
MoreOverview of Rare Bleeding Disorders
ISTH 2015 (Toronto, June 20-25) Life-threatening bleeding can occur in patients with FVII and FXIII deficiency, including bleeding into the head (intracranial hemorrhage or ICH).
MoreEvaluation Of Head Bleeds (Intracranial Hemorrhages)
HTRS 2015 (New Orleans, April 16-18) Intracranial hemorrhages, also known as ICH or head bleeds, have different classifications based upon location and may have different symptoms and treatments.
MoreInhibitors in Patients with Non-Severe Hemophilia A
HTRS 2015 (New Orleans, April 16-18) Patients with mild or moderate (non-severe) hemophilia A can also develop inhibitors or antibodies against factor FVIII therapy but at a lower rate (1 in every 10-20 patients) than those with severe hemophilia.
MoreCardiovascular Disease In Patients with Hemophilia
HTRS 2015 (New Orleans, April 16-18,) It was believed that hemophilia had a protective effect on patient’s cardiovascular health, but some recent studies suggest that patients with hemophilia might be at a higher risk of cardiovascular disease.
MoreImpact of Hemophilia on Young Adults in HERO Study
AMCP 2015 (San Diego, April 7-10) A recently completed analysis of young adult patients with hemophilia who had taken part in the HERO study identified specific issues relevant to the transition from adolescence to adulthood.
MoreBleeding and Treatment in Factor XIII Deficiency
ASH 2014 (San Francisco, December 6-9) The PRO-RBDD study is a global initiative focused in part on assessment of patients with fibrinogen and factor XIII deficiency over 3 years. To date, 15 sites submitted 109 cases of factor XIII deficiency.
MoreMeasuring Patient Reported Outcomes in Hemophilia
ISPOR 2015 (Philadelphia, May 16-20) A study of 381 adult patients with hemophilia of any severity with a history of joint pain or bleeding examined the reproducibility and reliability of 5 different patient reported outcome measures (surveys).
MoreGlanzmann’s Impacts Patients & Caregivers
ASH 2014 (San Francisco, December 6-9) To assess the impact Glanzmann’s Thrombasthenia (GT) has on patients and caregivers, adults with GT and parents of children with GT were requested to respond to an internet survey.
MoreHCP Identify Unmet Needs in Glanzmann's
ASH 2014 (San Francisco, December 6-9) A survey about unmet needs in patients with GT was disseminated to hematologists and nurses/nurse practitioners. Out of 150 healthcare professionals who responded, 46% were based in HTCs
MoreHemophilia Result in Joint Pain in Young Adults
NHF 2014 (Washington DC, September 18-20): In the US, 189 adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 years.
MoreHemophilia Impacts Young Adult Relationships & Employment
NHF 2014 (Washington DC, September 18-20): In the US, 189 adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 years. About one third of YA-PWH were married or in long-term relationships.
MoreBarriers Accessing Treatment at HTCs in US PWH
NHF 2014 (Washington DC, September 18-20): In the US, 66 young men aged 18-30 (median: 26) years responded to the HERO study questionnaire. The reported diagnosis included hemophilia A, hemophilia B and hemophilia A or B with inhibitors.
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