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Genomic DNA, Plasma, Serum

The Genetic Investigation in Frontotemporal Dementia and Alzheimer's disease (GIFT) study is aimed at identifying novel genes causing or altering susceptibility to Frontotemporal Dementia (FTD) and Alzheimer's disease (AD), by re-sequencing a panel of genes involved in tau metabolism in a large series of well-characterized patients with AD and FTD and controls enrolled in 6 major centers in California and Georgia.

The GIFT network includes 5 centers in California (University of California at Los Angeles, San Francisco, Davis, Irvine, University of Southern California) and Emory University. Clinical data from patients enrolled at each Center are collected at the National Alzheimer's Coordinating Center (NACC) and DNA and cell lines have been collected at the National Cell Repository for Alzheimer's Disease (NCRAD).

A first set of genetic data has been deposited within the National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) and a DNA methylation dataset including a subset of GIFT study participants is available in the Gene Expression Omnibus (GEO) .

Genomic DNA, Cell Line DNA, Lymphoblastoid Cell Lines (LCLs)

Indianapolis-Ibadan

Established in 1991 as a longitudinal, prospective, population-based, comparative epidemiological study of the prevalence, incidence rates, and risk factors for Alzheimer’s disease and other age associated dementias.

The project enrolled community-dwelling, elderly (age >65 years) African Americans living in Indianapolis and Yoruba living in Ibadan, Nigeria, employing the same research design, methods, and investigators.

The funding for this study ended in 2012. During the course of the study, over 8000 (n=8528) elderly African American and Yoruba participants were evaluated over a 20 year period. A fixed minimal dataset is available through the NCRAD catalog. An additional dataset can be requested through the Indianapolis Ibadan Executive Committee.

NCRAD Family

The NCRAD Family Study began in 1990 and is still actively recruiting and following subjects. Subjects are contacted annually for updates on diagnoses within their family.

Families with two or more members with early or late onset AD and related dementias. Samples are obtained from affected family members and unaffected relatives (typically over age 60).

These families are not evaluated in person and all clinical information is obtained through telephone and medical record review. Therefore, data is limited to the following: family history; demographic data; medical records on the evaluation; diagnosis and treatment of symptomatic subjects; telephone cognitive batter; neuropathological findings when available.

For instance, Hennigan, et al. (2010), measured the effects of intensive supervision using a randomized controlled trial (RCT) in Los Angeles. Juveniles sentenced to probation were randomly assigned to intensive supervision—in the form of a community-based after-school program—or standard probation. Five years later, there were no significant differences in outcomes between the treatment and control groups, with one exception: Low-risk boys (ages 15 or younger) who were randomized to intensive supervision were worse off. Intensive supervision for that group led to more incarceration and a higher likelihood of continued criminal justice involvement in the years ahead. That is, intensive supervision increased criminal activity by this group, without reducing criminal activity by other groups.

Barnes, et al. (2012) used an RCT to study supervision levels in Philadelphia. Low-risk probationers were randomized to probation as usual or low-intensity supervision by parole officers with high caseloads (which forced them to pay less attention to each individual case). Less supervision means probationers may be less likely to get caught for technical violations, such as using drugs or breaking curfew. But these requirements of probation are a means to an end: what really matters for public safety is the number of new offenses committed. Eighteen months after randomization, there were no significant differences between the treatment and control groups in the likelihood of being charged for a new offense. In other words, low-intensity supervision did not result in more recidivism....

These studies show that current efforts to reduce recidivism through intensive supervision are not working. Why is intensive supervision so ineffective? Requiring lots of meetings, drug tests, and so on can complicate a client’s life, making it more difficult to get to work or school or care for family members (meetings are often scheduled at inconvenient times and may be far away). A heavy tether to the criminal justice system can also make it difficult for individuals to move on, psychologically. Knowing that society still considers you a criminal may make it harder to move past that phase of your life. These difficulties may negate the valuable support that probation and parole officers can provide by connecting clients to services and stepping in to help at the first sign of trouble.

It is unclear what the optimal level of supervision is for those on parole or probation, but these studies demonstrate that current supervision levels are too high. We could reduce the requirements of community supervision — for low-risk and high-risk offenders alike — and spend those taxpayer dollars on more valuable services, such as substance abuse treatment or cognitive behavioral therapy. This would be a good first step toward breaking the vicious incarceration cycle.

July 3, 2018 in Collateral consequences , Criminal Sentences Alternatives , Purposes of Punishment and Sentencing , Reentry and community supervision | Permalink | Comments (1)

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| Oct 28, 2015 | Digital Transformation , Innovative Campaigns | 0 comments

One of the best parts about being a consultant is being able to learn new ideas from organizations pushing the edge of innovation, and share them across sectors. I recently learned a new way of looking at and equipping advocacy campaigns based on what phase they are in: organizing vs mobilizing, that I think has real power for all of us.

This new model is state of the art because it helps answer the question I’ve been exploring for a decade now: why do many of the bigger orgs with massive email lists, lots of resources, and 10-30 “active” campaigns have such low supporter engagement and so rarely “win” campaigns, vs how new, digital-first start-ups with way fewer staff are able to move faster, engage people more deeply, and chalk up win after high profile win?

Maybe it’s less about how new they are but rather how disciplined and focused at different stages of their campaigns they are.

For organizations grounded in policy work – which means most of the non-profit sector – the model shows how to grow capacity and hold back resources that are activated only once the opportunity for a win emerges. Let me walk you through it.

Organizing is building your power

According to the model, most campaigns are in the organizing phase most of the time. The work we do raising awareness on issues not getting enough attention is by nature a long haul operation. So after our program or policy team have identified a problem and a solution, our first phase of campaigning is about building our power, finding our people, and growing our momentum.

Activities in the organizing phase of a campaign might include:

Organizing is a more measured, low to medium profile phase, and it’s maybe even a bit boring. But it creates critical trust – with supporters, with influencers and the media, and internally within our organization or movement – that we’ll call on later once the stakes rise and we need them to show up.

It’s the foundation for winning, but winning comes next.

The mobilization phase of a campaign is activated when a unique opportunity to actually fix our issue arises. It’s where we activate our audiences and spend down our resources at the pressure points we identified during organizing.

And to have impact, it should only be used sparingly, only when a binary yes/no opportunity to actually solve our issue for real opens up. This opportunity might be a vote/referendum, a scandal that pushes our issue into the mainstream, a clear target that has emerged, or when we’ve hit a critical mass in our ally or supporter base and can’t hold them back any longer without losing steam. Then we focus all our assets on one clear target to force their hand.

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