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1971 – Drs. John O’Brien and Shintaro Okada develop first enzyme test for Tay-Sachs disease |
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1990 – Dr. Matalon publishes details of prenatal enzymatic screening test for Canavan Disease |
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1993 – Dr. Matalon and others publish sequence of normal and mutated aspartoacylase gene, allowing for DNA-based Canavan testing |
1997 – US Patent 5,679,635 issues, claiming methods of screening for Canavan disease |
1995 – American College of Obstetricians and Gynecologists (ACOG) recommend DNA-based carrier screening for Tay-Sachs disease before pregnancy if both parents of Ashkenazi Jewish, French-Canadian, or Cajun descent |
1998 – 1999 – Miami Children’s Hospital (MCH) sends enforcement letters to hospitals and laboratories testing for Canavan disease |
1998 – ACOG recommends DNA-based carrier screening for Canavan disease if both parents are of Ashkenazi-Jewish descent and prenatal, DNA-based diagnostic if both parents are carriers |
January 20, 2000 – Canavan Disease Screening Consortium and Canavan disease experts meet with MCH to discuss licensing patents |
1998 – American College of Medical Genetics (ACMG) recommends that people of Ashkenazi Jewish descent be offered DNA-based carrier screening for Canavan disease prior to pregnancy and that DNA-based screening for Canavan disease and Tay-Sachs disease be combined because both diseases are common among Ashkenazi Jews |
October 2000 – After MCH fails to find single, large-volume licensee for Canavan testing and only discloses information about 4 of 12 licensees to Canavan Disease Screening Consortium, patient advocacy groups and families with Canavan disease sue MCH, MCH Research Hospital, and Dr. Reuben Matalon (Greenberg v. Miami Children’s Hospital) |
August 3, 2003 – Greenberg v. Miami Children’s Hospital is settled out of court on confidential terms |
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