A 5-year-old boy confined to a hospital room due to SCID (a rare immune disorder) is asking people to wear yellow in a show of support before his next operation — and the response on social media has been overwhelming, his family says.
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Immunopathology & Immunotherapy
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Latest advances in immunopathology diagnosis and treatment
Curated by
Alfredo Corell
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Opinion from JAMA — Newborn Screening for Severe Combined Immunodeficiency — Progress and Challenges (RT @JAMA_current: #Newborn Screening for Severe Combined #Immunodeficiency http://t.co/opTP3izQBP...
Alfredo Corell's insight:
September 30, 2014, marks the 50th anniversary of the Children’s Bureau recommendation for “the screening of all newborn infants for PKU [phenylketonuria] on a routine basis.”1 By 1968, 43 states had made screening for PKU mandatory.1 As a result of technological advances, newborn screening in the United States has been extended to as many as 37 core conditions in some states.2 As reported by Kwan and colleagues3 in this issue of JAMA, newborn screening for severe combined immunodeficiency (SCID) has been undertaken in 23 states and the Navajo Nation, beginning in Wisconsin in January 2008. The authors present data on more than 3 million newborns screened with a T-cell receptor excision circle (TREC) assay followed by confirmatory flow cytometry from 11 of these programs (10 states and the Navajo Nation). 
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Alfredo Corell's insight:
Conclusions
TREC NBS in California has achieved early diagnosis of SCID and other conditions with T-cell lymphopenia, facilitating management and optimizing outcomes. Furthermore, NBS has revealed the incidence, causes, and follow-up of T-cell lymphopenia in a large diverse population.
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Severe combined immunodeficiency (SCID) is an immune deficiency that can be successfully treated if it's identified early.
Alfredo Corell's insight:
Principles and basis to explain falimies and kids abou these rare disease. Worth a reading for any student of Medicine or Nurses themselves.
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From
khon2
Hawaii now universally screens for all disorders on the U.S. Department of Health and Human Service Recommended Uniform Screening Panel.
Alfredo Corell's insight:
A new STEP for newborn screening of PIDs worldwide :) “While this condition is rare, it can have serious life-threatening consequences for newborn infants,” said Sylvia Mann, DOH Genomics Section Supervisor. “Fortunately, early screening can identify this and other inherited conditions, giving newborns a chance for life-saving treatment.”
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Original Article from The New England Journal of Medicine — Transplantation Outcomes for Severe Combined Immunodeficiency, 2000–2009
Alfredo Corell's insight:
Sung-Yun Pai, M.D., Brent R. Logan, Ph.D., Linda M. Griffith, M.D., Ph.D., Rebecca H. Buckley, M.D., Roberta E. Parrott, B.S., Christopher C. Dvorak, M.D., Neena Kapoor, M.D., Imelda C. Hanson, M.D., Alexandra H. Filipovich, M.D., Soma Jyonouchi, M.D., Kathleen E. Sullivan, M.D., Ph.D., Trudy N. Small, M.D., Lauri Burroughs, M.D., Suzanne Skoda-Smith, M.D., Ann E. Haight, M.D., Audrey Grizzle, M.P.H., Michael A. Pulsipher, M.D., Ka Wah Chan, M.D., Ramsay L. Fuleihan, M.D., Elie Haddad, M.D., Ph.D., Brett Loechelt, M.D., Victor M. Aquino, M.D., Alfred Gillio, M.D., Jeffrey Davis, M.D., Alan Knutsen, M.D., Angela R. Smith, M.D., Theodore B. Moore, M.D., Marlis L. Schroeder, M.D., Frederick D. Goldman, M.D., James A. Connelly, M.D., Matthew H. Porteus, M.D., Ph.D., Qun Xiang, M.S., William T. Shearer, M.D., Ph.D., Thomas A. Fleisher, M.D., Donald B. Kohn, M.D., Jennifer M. Puck, M.D., Luigi D. Notarangelo, M.D., Morton J. Cowan, M.D., and Richard J. O'Reilly, M.D. N Engl J Med 2014; 371:434-446July 31, 2014DOI: 10.1056/NEJMoa1401177 CONCLUSIONS Transplants from donors other than matched siblings were associated with excellent survival among infants with SCID identified before the onset of infection. All available graft sources are expected to lead to excellent survival among asymptomatic infants. (Funded by the National Institute of Allergy and Infectious Diseases and others.)
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San Francisco Chronicle
Alfredo Corell's insight:
Eight of the nine boys registered to date in the new trial are alive and well, with functioning immune systems and free of infections associated with SCID-X1, between nine and 36 months following treatment, according to Sung-Yun Pai, MD, a pediatric hematologist-oncologist from Dana-Farber/Boston Children's Cancer and Blood Disorders Center. She presented the findings at the 55th annual meeting of the American Society of Hematology on behalf of the Transatlantic Gene Therapy Consortium (TAGTC). The investigators continue to monitor the children for signs of treatment-associated leukemia, which developed three to five years post-treatment in the prior trial. They point to surrogate biological markers that give them hope the viral vector used to deliver the new treatment is safe.
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Alfredo Corell's insight:
A guide for parents who recieve an abnormal screen for SCID.
And the Newborn Screening Campaign, that in the near future will have the first sucess in Pennsylvania.
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He asked supporters to wear his favorite color on March 27, before he undergoes a second bone marrow operation, and post the photos online with the hashtag #WearYellowForSeth. Seth’s family, from Northamptonshire, England, has been chronicling his time at the hospital on their blog, “Our Little Hero.”