Scroll
To Top

August 1, 2013

TOPIC: Medical, Patients & Members, Research

Informed Consent in Biobank Research

Posted at August 8, 2013 06:33 pm by Marsha Lanes

Genetic biobanks, storage facilities for DNA, genetic data and tissue samples, are becoming more prevalent in the rare disease community.   The information and samples can be made available to approved researchers for clinical studies, but unlike clinical trials, there is usually no personal benefit or follow-up provided to participants.  (more…)Read More

January 15, 2013

TOPIC: Patients & Members, Research

Privacy Protection in Whole Genome Sequencing

Posted at January 1, 2013 05:11 pm by Marsha Lanes

Whole genome sequencing (WGS) is the genetic test that determines the order of all 3 billion letters in a person’s DNA, and is a technology that has become well known to the rare disease community.  It can reveal not only the genes responsible for production of an abnormal protein associated with a disease, but also the presence of other… Read More

December 6, 2012

TOPIC: Industry, Medical, Patients & Members, Research

Can IBM Watson Replace Dr. Dhaliwal? Probably Not!

Posted at December 12, 2012 03:28 am by

Everyone in the rare disease community who watched IBM’s “Watson” computer perform on “Jeopardy” early this year probably started to wonder about the potential of “Watson-like” systems to assist doctors in accelerating the accurate diagnosis of rare and unusual medical disorders — one of the first and most critical steps in assuring quality of care. … READ… Read More