Dateline BTB - Archive
February 2013 – The meeting of the American Academy for Forensic Sciences offered the opportunity for the Bank to recruit medical examiners to assist the Bank in identifying individuals with autism spectrum disorders (ASD) and normal children who are so vital to research on identifying the underlying mechanism of ASD. Ten medical examiners agreed to inform the Bank of cases of interest so that the Bank could contact the family for consent. A significant number of additional attendees visited the booth and talked with the staff about brain and tissue donation. The meeting was attended by Deanna Wilson, Ling Li and Ron Zielke.
November 2012 – The Neuroscience meeting in New Orleans is an opportunity to meet with researchers who have received tissue from the Bank in the past as well as to continue to inform neuroscientists of the availability of human tissue for research. The Bank was represented by John Cottrell, Robert Johnson and Ron Zielke.
Fall 2012 – Two publications based on human tissue received from the NICHD BTB were honored by serving as the cover article of two outstanding journals.
- "An anatomically comprehensive atlas of the adult human brain transcriptone" by Hawrylycz et al. (September 20, 2012)
- "Single-Neuron Sequencing Analysis of L1 Retrotransposition and Somatic Mutation in the Human Brain" by Evrony et al. (October 2012)
October 2012 – The Bank was represented with a booth at the National Association of Medical Examiners meeting in Baltimore Maryland by members of the Bank staff. This is a critical means of inviting medical examiners to participate in the collection of donors that are vital to advancing research in critical research such a autism spectrum disorders (ASD) and other pediatric disorders.
July 2012 – The NICHD Brain and Tissue Bank was represented at the Florida Association of Medical Examiners (FAME)” and provided information on ongoing studies in Florida on Sudden Unexpected Infant Death and Autism Spectrum Disorders.
July 2012 – The NICHD Brain and Tissue Bank, with the additional support by the Department of Pediatrics at the University of Maryland School of Medicine, hosted a workshop at NIH on “Contributions of Post-Mortem Tissue to the Study of Developmental Disorders.” See detailed information on the home page.
May 2012 – Ron Zielke attended the International Meeting for Autism Research (IMFAR) in Toronto and provided information to both researchers and families with Autism Spectrum Disorder. Presentations of studies utilizing post-mortem tissue reinforced the important contributions made by the generosity of families who have donated tissue at the time of death. Discussions also continued on the importance of proper phenotyping of ASD cases.
May 2012 – Ron Zielke attended a meeting at NIH to participate in a discussion on “Brain and Tissue Banking Through a Federated Model”. Post-mortem tissue has become critical to the understanding of a wide range of medical disorders, however, the tissue is not available to researchers for a multiple of reasons such as: 1) the number of cases collected is insufficient to meet the needs of researchers, 2) researchers do not know of the availability or location of the tissue, 3) the tissue was not collected under standard conditions, 4) the demographic and clinical information attached to the tissue is not consistent between banks, 5) evaluation of the tissue quality is not standard. It is anticipated that a cooperative interactive system can be established for tissue banks funded by NIH that will overcome these difficulties and speed up medical research. This is a work in progress.
March 2012 - Ten scientists, pathologists, ethicists and government officials from Japan visited the NICHD Brain and Tissue Bank to discuss the formation and operation of a national tissue bank in Japan. Each member of the NICHD Brain and Tissue Bank made a presentation during the 6 hour meeting. Representatives of the IRB and the Medical Examiner’s office were present to discuss issues pertaining to protection of donor rights and the legal medical issues involved in the support of tissue donation through a government agency.
October 2011- The important work performed by the NICHD Brain and Tissue Bank was highlighted in a recent article by Alison Abbot in Nature, "Brain Child." The article focused on the need of donated brains from healthy children following accidental deaths for the study of autism spectrum disorders, schizophrenia, and many other disorders. Although the NICHD BTB has numerous brains from children, sometime critical areas of the brain needed for research have been depleted due to high demand by researchers. The need for additional pediatric brains was echoed by several other researchers who were interviewed. Most of these researchers are major recipients of tissue from the NICHD BTB. It is hoped that a joint effort may enhance tissue donation so that the children’s legacy may be a world free of dreaded diseases such as autism, schizophrenia, adrenoleukodystrophy, tuberous sclerosis and many others that afflict children and young adults.
August 2011 - Final protocols for the initiation of the Sudden Unexpected Death in Infancy (SUDI) Study in Florida were approved and implemented. To date several families have donated tissue during their time of grief to aid in the understanding of the tragic events that rob the family of the infants they loved.
03/11/2011 - The Blazeman Foundation for ALS consulted with Ron Zielke on their effort to enhance research on ALS (Amyotrophic Lateral Sclerosis) through tissue donation from individuals with ALS to the Bank. The foundation is named after Jonathan “Blazeman” Blais, the only athlete with ALS to compete in the Ironman Triathlon in Kona, Hawaii. Jon managed to complete the race by rolling on the ground across the finish line. In so doing, he created what has become known as the “Blazeman Roll”. In honor of Jon, other athletes now use the “Blazeman Roll’ at the end of triathlon events. The Blazeman Foundation has the support of fellow athletes from around the world in its goal to raise awareness of ALS and to support cutting edge research.
02/22/2011 - 02/25/2011 - Drs. Ling Li and Ron Zielke are attending the 63rd Annual Scientific Meeting of the American Academy of Forensic Sciences in Chicago, IL. The Bank works closely with medical examiners and coroners throughout the USA for tissue donations.
SUDI - Sudden Unexpected Death in Infancy - For over a year the Bank has been working with the American SIDS Institute in initiating a tissue donor program in Florida for the study of SUDI. The project is overseen by Dr. Kathleen Currey and requires specialized IRB approved consent forms and updated tissue sectioning protocols.
02-02-2011 - Drs. Elaine Shen and John Phillips of the Allen Institute for Brain Science visited the Bank and gave a presentation on the Allen Human Brain Atlas project at the Maryland OCME. Currently, the atlas consists of more than 90 million data points from some 1500 sampled regions utililzing tissue from the NICHD BTB. The NICHD BTB continues to work with the Allen Institute to provide tissue that meets the strict guidelines required of the project. The Allen Human Brain Atlas is an extraordinary endeavor to provide a comprehensive brain and genome map of the human brain. Learn more!.
February 2011 - Drs. Ling Li and Ron Zielke continue to provide extensive information on tissue banking, especially regarding seizure disorder cases already donated to the Bank, to a consortium of researchers who are participating in SUDEP research.
01-25-2011 - Our yearly letter and questionnaire have gone out to more than 200 researchers who have received tissue from us over the past 2 1/2 years. Please let us hear from you before the February 14th deadline. With the information you provide, we can update the ever growing list of more than 850 publications (papers and abstracts) utilizing tissue received from the NICHD BTB. You can fax or email your response.
12-02-2010 - Dr. Kathleen Currey presented "Spells, Spasms, Stare Offs, Fit and Falling Out - It's not always what it seems." at Pediatric Grand Rounds at the University of Maryland. She discussed the basics of EEG interpretation and some of the common epilepsy syndromes. She also showed four cases with video accompanied by EEG tracings where the final diagnosis was different than the initial impression, thus demonstrating the significant usefulness of this technology to often clarify difficult problems.