Researchers in San Francisco, New York, and Oxford describe a new type of hemophilia, arising from a defect in what is now known as factor IX (9). Rosemary Biggs from Oxford, UK, named it Christmas disease, after the first patient, Stephen Christmas.
In a 1994 edition of Blood Coagulation & Fibrinolysis, Dr. H.R. Roberts draws a comparison of the European Accord to MASAC's recommendations for prophylaxis treatments.
The International Committee for the Nomenclature of Blood Clotting Factors was established with one of its primary objectives the development of a common scientific terminology. The committee consisted of 23 members from 15 countries, all of whom played significant roles in the discovery or application of knowledge regarding these factors.
Factor XII (also called Hageman factor) was first discovered in 1955 when a routine blood sample of a man named John Hageman had prolonged clotting time in test tubes. Hageman was then examined by hematologist Oscar Ratnoff, who found that Hageman lacked a previously unidentified clotting factor, even though he had no hemorrhagic symptoms.
Stephen Christmas, the inspiration behind the alternative name for hemophilia b ("Christmas Disease"), passed away on December 21, 1993
Hemophilia B is first referred to as "Christmas Disease" in a 1952 edition of the British Medical Journal. The condition was dubbed with the name not for the article's publication during the holiday season, but after it focused on a then five-year-old boy named Stephen Christmas.
The CDC teams up with Cooley's Anemia Foundation to create a blood safety program modeled after the successful program already in place for hemophilia patients.
A 10-year study on joint damage run by NHF medical trustee Henry H. Jordan concludes. A few years later, Henry would publish a monograph on his findings involving 56 hemophilia patients.
In 1946, Dr. Henry Jordan, a surgeon and medical trustee of NHF, began a program for the orthopedic treatment of hemophilia patients. The study was funded and conducted in cooperation with NHF, and was run out of Lenox Hill Hospital in New York City. The study included 110 patients and ran through 1956.
Dr. Henry Jordan, a trustee of the medical advisory council of the National Hemophilia Foundation, publishes a well-received book on treatments for hemophilic arthropathy (joint damage). The research cases featured in the book were funded by NHF.
On April 7, 1948, 61 nations attended the first World Health Assembly and signed the constitution of the World Health Organization.
As part of the Hemophilia Inhibitor Study (HIRS), CDC gene sequences and develops a comprehensive list (CDC Hemophilia A and Hemophilia B Mutation Project known as CHAMPS) of the thousands of gene variants (or differences) that have been reported to cause hemophilia.
Results from CDC’s Hemophilia Inhibitor Research Study (HIRS), a pilot surveillance project conducted at CDC from 2006–2009, are published in the Journal of Thrombosis and Haemostasis. The findings from this project led to a modified testing method for inhibitors (antibodies) to hemophilia factor-replacement treatment products.
Results of a CDC survey of women with von Willebrand disease (VWD), published in Haemophilia, find that there is an average of 16 years between the onset of symptoms and diagnosis of a bleeding disorder, pointing to the need for timely referral by gynecologists and other providers to a Hemophilia Treatment Center (HTC) and specialty testing by trained lab personnel to ensure proper diagnosis and treatment.
An NHLBI-funded study showed that nucleic acid-amplification testing for HIV-1 and hepatitis C virus further safeguards the nation's blood supply.
In a blog post, NIH Director Dr. Francis Collins says that "Gene therapy represents a possible cure for hemophilia A."
The first COVID-19 vaccines are administered in the U.S.
The first case of the novel coronavirus (COVID-19) is found in the USA.
Dr. Jeanne Lusher, former MASAC president and a leading researcher of inhibitor antibodies, passes away.
In 2013, three separate gene therapy trials for hemophilia begin at institutions across the country.
The NHLBI launched the National Blood Disorders Program, a public-private partnership.
The CDC hosts its first inhibitor summit.
Results from a CDC study, published in Haemophilia, document that obesity is an independent risk factor for poor joint mobility in males with hemophilia.
Scientists publish findings that reveal that Alexei, the hemophiliac prince of the Romanov family, specifically had hemophilia B.
Rare Disease Day begins in the USA.
Dr. Oscar Ratnoff, a pioneering expert on blood clotting, passes away.
The NHLBI issued the first U.S. guidelines for the diagnosis and management of von Willebrand Disease, the most common inherited bleeding disorder.
Based on the published results of a clinical trial, prophylactic (preventative) treatment becomes the standard of care in the United States for people with hemophilia in an effort to decrease the frequency and occurrence of bleeds, and thus, prevent joint damage.
CDC initiates the Hemophilia Inhibitor Research Study (HIRS). Results of this study have been crucial in understanding which hemophilia patients are at highest risk of developing inhibitors (antibodies) that reduce the effectiveness of their treatment products.
The Human Genome Project (HGP) was one of the great feats of exploration in history. An international team of researchers sequenced and mapped the genome of homo sapiens.
An assessment of data from CDC’s Universal Data Collection (UDC) system, published in Morbidity and Mortality Weekly Report (MMWR), demonstrates that since 1998, no new infections of hepatitis A, B, and C or HIV have been linked to blood products used to treat hemophilia.
HTC roles for Regional director/regional coordinator responsibilities are standardized.
Dr. Kenneth Brinkhous, the first chair of MASAC, passes away.
The first factor IX (9) product granted FDA approval.
The development of a bypassing agent in 1997 offers inhibitor patients an alternative product to help stop bleeds and joint damage.
The World Health Organization and the World Federation of Hemophilia recommend prophylaxis as the treatment of choice in children with hemophilia, based on evidence-driven studies.
In 1993, the FDA issued a new guideline and formally rescinded the 1977 policy that banned most women from participating in studies. To ensure that the policies for inclusion were firmly implemented by NIH, the Congress made what had previously been policy into law, through a section in the NIH Revitalization Act of 1993.
The first recombinant factor VIII (8) product is approved by the Food and Drug Administration (FDA).
The Human Genome Project begins.
W. French Anderson and his colleagues at the NIH perform the first approved gene therapy procedure on a four-year-old girl born with severe combined immunodeficiency.
An article in the Journal of Biological Chemistry announces that the structure of the gene for human von Willebrand factor is succesfully cloned for the first time.
The HCV is first identified; it soon becomes clear that an even higher proportion of people with hemophilia have been exposed to this virus, which can result in chronic liver disease.
Isolation of the genes controlling factor VII and von Willebrand's factor production. (Factor VII deficiency results in a rare form of hemophilia, but also may have broad applications in treating more common forms of hemophilia.)
The media reports that 70%-90% of hemophiliacs in the U.S. are infected with AIDS.
CDC Morbidity and Mortality Weekly Report (MMWR) reported 72% of severe asymptomatic hemophiliac had antibody to LAV antigens using the Western blot test. This virus is now known to be a member of the HIV-1 group of viruses.
A research team led by Dr. Jay Toole successfully cloned the human gene for the production of the blood-clotting protein Factor VIII.
DDAVP is declared by researchers to be a useful alternative to blood components in moderate hemophilia A and Von Willebrand disease.
Hepatitis B vaccination is introduced in the U.S.
Cloning of factor IX is first reported.
It is discovered that desmopressin acetate (DDAVP) could boost levels of both factor VIII (8) and von Willebrand factor (vWF). DDAVP remains a useful option in mild forms of these conditions.
In 1977, the FDA issued a guideline banning most women of "childbearing potential" from participating in clinical research studies. This was the result of certain drugs (most notably thalidomide) causing serious birth defects. At the time, the focus was on protecting the most vulnerable populations at all other costs.
The NHLI was renamed the National Heart, Lung, and Blood Institute (NHLBI), reflecting an expansion in blood-related activities within the Institute.
In 1976, the Children’s Hospital Los Angeles Hemophilia Treatment Center is established. It is one of the first Hemophilia Treatment Centers in the United States. The Center is originally called the Hemophilia Comprehensive Care Center.
For many patients, at-home care becomes a reality thanks to the industrial manufacturing and commercial availability of freeze-dried plasma concentrates of FVIII for HA and of the coagulation factors (II, VII, IX, X).
Dr. Oscar Ratnoff and his colleagues at Case Western University publish their findings on an immunulogical assay test that can identify female carriers of hemophilia.
In 1971, a test for hepatitis B antibodies is developed to identify infected donors; the test is mandated by the FDA for blood donation.
In 1966, Dr. Jeanne Lusher is the first individual to ever identify inhibitors as antibodies to factor VIII.
Dr. Judith Graham Pool publishes a paper that notes her discovery that slowly-thawed frozen plasma yields deposits high in Factor VIII. These deposits, called cryoprecipitates - or cryo -, are found to have much greater clotting power than plasma and are given to hemophiliacs to stop bleeding episodes.
An article in the scientific journal Nature details the complex clotting process, calling it the coagulation cascade.
Inga Marie Nilsson, a Swedish physician, begins prophylactic treatment in boys with severe hemophilia A.
Researchers in Sweden identify von Willebrand factor as the cause of VWD.
American pathologists Robert Langdell, Robert Wagner, and Kenneth Brinkhous develop intravenous infusions of factor VIII (8).
Dr. Judith Graham Pool publishes her first research paper on hemophilia.
Dr. Charles Drew, an innovator in modern blood transfusions and a leader in inspiring health equity efforts for African American patients and physicians, passes away suddenly in a car crash.
Development of the plastic bag revolutionizes blood collection.
The discovery of canine hemophilia, which allowed for controlled experimentation, led to great strides in both genetic and biochemical research toward the treatment and cure of hemophilia.
In 1947, Dr. Alfredo Pavlovsky, a doctor in Buenos Aires, Argentina, distinguished two types of hemophilia in his lab: A and B.
Edwin Cohn from Harvard University develops “plasma fractionation” in order to prepare products such as albumin and IgG for the blood volume expander. Nowadays, most of the modern human plasma fractionation industries are based on Cohn’s method.
