PMC:2493521 / 18017-20615 JSONTXT

{"project":"2_test","denotations":[{"id":"18347928-9520010-20694282","span":{"begin":2303,"end":2307},"obj":"9520010"}],"text":"Flow of subjects through the Brain and Body Donation Program Clinical Core\nThe flow of subjects through the Brain and Body Donation Program Clinical Core over the 5 year period between January 1, 2001 and December 31, 2006 is illustrated in Fig. 1. Note that this summary applies exclusively to subjects seen at Sun Health Research Institute and does not include subjects that were seen clinically at other institutions participating in our Arizona ADCC. On January 1, 2001 there were 255 living subjects enrolled in the Brain and Body Donation Program. This initial input of subjects was supplemented by 1078 new subjects recruited by the Clinical Core over the following 5-years, giving a total of 1332 subjects that flowed through the Clinical Core over this time period. There are two major pathways that subjects followed over this 5-year period, depending on whether or not they received a standardized clinical assessment by Core personnel. Although it is a requirement of the Program that donors consent to annual standardized clinical assessments at SHRI, and considerable efforts are expended to have every subject assessed, inevitably some (currently less than 10%) of our living subjects die without a standardized assessment. There are various reasons why not all subjects are assessed. Some subjects are in a terminal phase of illness when they register with the Program and die or become incapacitated before an assessment can be done, while others have difficulty scheduling an appointment for various reasons. A common impediment is a lack of someone to bring them in if they are not able to drive themselves. Some donors had enrolled in the Program prior to when clinical assessments became mandatory and are therefore allowed to remain as brain donors only. For normal control cases that die without a standardized clinical assessment at SHRI, or whose last SHRI assessment was more than a year prior to death, an effort is made to obtain postmortem functional assessments by using telephone interviews with informants. The Dementia Questionnaire (DQ) has been used for this purpose, with 42 postmortem DQ assessments obtained between July 1, 2000 and August 1, 2007. The DQ has been validated in subjects who had both a premortem clinical diagnosis and a postmortem DQ (Ellis et al. 1998). The DQ has a high specificity and sensitivity for the presence of dementia (93% and 89%, respectively), and also has a high interrater agreement (98%).\nFig. 1 Subject flow through the Brain Donation Program 01/01/01–12/31/06. Percentages are calculated with respect to total subject input"}