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Issue 44 Alzheimer’s Insights by Curation Health 14 July 2015
Ahead of the year’s biggest conference for Alzheimer’s research, starting this coming weekend in Washington DC, we look at a story of how a Californian court room is poised to rule on a tussle over medical data: who owns it for the purposes of research and development? The consolidation and impact of Alzheimer’s research generally, not only in North America but globally, could feel the effects.
Most read stories this week
New buzz around fruit flies
American football shows sporting lead
Biogen declines on data uncertainty
Care services lottery leaves many stranded
Good early stage news from AXON
Medical Information
Data tug of war breaks out in California
A quick spin through the Most Read stories, above, can generally be relied upon to uncover whatever is seen as big in the world of Alzheimer’s. Occasionally, however, a story with potentially huge implications flies in clearly under the radar, at first attracting little notice. An academic tug of war between two Californian universities, fighting for control over the ironically named Alzheimer’s Disease Cooperative Study (ADCS) is precisely this kind of story.

Adding additional spice to something that blew up just three weeks ago is the fact that thousands of health professionals, industry and academic researchers, care specialists and policy makers are converging at the end of this week for the annual Alzheimer’s Association International Conference in Washington DC. It’s a good bet that the ADCS tussle is going to be the hot topic. Simply, the impact of whatever is decided in the Californian courts could affect the progress of medical research for the foreseeable future, and in no discipline more than that of research into dementia.

The basic facts of the story are summarised here, in a piece that appeared last week on the Nature website. For a closer following of the story with more of the soap operatic elements included, a useful journalist to follow is Bruce Bigelow on the Xconomy website. His initial piece last week provided little more than can be found on the Nature website, but his follow-up pieces this week, here and here, convey a strong sense of the academic combatants really laying into each other.

Essentially, the ADCS was created in 1991 as a joint venture between the University of California at San Diego (UCSD) and the National Institute of Aging (NIA) to boost the development of drugs for the treatment of Alzheimer’s. Over time, the venture would be co-ordinating research from almost 100 primary and affiliated research sites in North America, with funding topping $100 million and an emerging Everest of data.

When a well-regarded scientist named Paul Aisen joined the programme in 2007, it took him scarcely a half-dozen years to grow dissatisfied with the pace of the project and the support it was getting from its university. When the new-money, immensely ambitious University of Southern California (USC) decided to become an epicentre of life sciences research and innovation just up the coast in Los Angeles, Aisen and a large number of his San Diego colleagues were persuaded to jump ship.

That must have been a disappointment to the university they left behind, but not as annoying as the fact that, according to the subsequent lawsuit, they took their data and exclusive administrative control of that data to Los Angeles with them.

As the Bigelow follow-up pieces make clear, the claims and counter-claims are roiling up quickly into the black cloud of chaos that is typical in cases of corporate litigation, but the competing principles at stake still seem pretty clear. On the one hand, is there a protocol for handling a situation where one lead investigator in a publicly funded research project changes his academic address? UCSD says yes, the data is theirs.

Not so fast, say Aisen and his new employers, who are arguing for the long-term interest of the intended beneficiaries of the research – the patients who depend upon the research team that can derive the most good from the project: that is themselves. Amusingly, San Diego is likening the actions of Los Angeles up the road as akin to the thief who takes the keys with the car on the basis that they are a better driver.

Between the property ownership argument on the one hand, and the product efficacy claim on the other, the courts must now determine the protocol by which the aims of the ADCS project itself can be nurtured through this distracting chest-thumping.

The stakes are particularly high with Alzheimer’s, not just because of the state of current research and the struggle to find cures or modifiers, but because of the atomised state of the research estate generally – thousands of different projects and targets and funding pots of all sizes: the resulting research pipeline is just so long.

Making sense of the emerging data may get easier as artificial intelligence enables quicker data processing, but not if the human intelligences invested in the process keep fighting over the results. And it is hard to see how future funding by industry sponsors or government agencies will be encouraged if questions of data ownership are not securely grounded in firm principle and consequently in fair case law.

Alzheimer’s conference ready for take-off
Thousands of health professionals, researchers and care specialists are descending on Washington DC at the end of this week for the world’s biggest conference relating to Alzheimer’s disease. Drawn from more than 70 countries and attracted by 85 sessions over six days and with 1,800 poster and oral presentations, attendees will have a chance to catch up on the latest developments in clinical research of all kinds, and presentations featuring best practice in patient care and in community support for the disease.

INSIGHTS will be monitoring the stories as they come through and getting instant reaction from delegates on the ground: what are our best hopes for progress in curing or modifying the disease, and for improving and funding treatment? What can we expect to see over the next twelve months ahead of next year’s conference in Toronto? Check out the conference website here.

Latest Alzheimer's Medical Info
Drugs & Clinical Trials
Fruit flies offer speedier data
Researchers in Australia have been genetically altering a type of fruit fly, the vinegar fly to be precise, to carry Alzheimer’s disease in the hope of getting closer to a cure.

In the words of lead researcher Dr Ian Musgrave at the University of Adelaide, as reported here on the ABC website: “We are looking at the possibility of natural products that are able to prevent the toxic protein that forms in Alzheimer’s disease from misfolding and causing damage.”

While there are several types of animal and insect that can be, and are, involved in medical research of this type, what commends the fruit fly in this context is the rapidity of its lifecycle. The effects of genetic modification work themselves through in a matter of a very few weeks, rather than the many months that a mouse might take, or the years and decades that can apply in human subjects.

Biogen shares hit a rough patch
After Axovant, Biogen: the biotech company which sparked stock market exultation four months ago has seen a possibly inevitable levelling out of enthusiasm for its share price, with this story on the BloombergBusiness site noting a small decline in its value – but hardly the “plunge” described in the story’s headline. Investors and analysts will be watching company announcements closely at this coming weekend’s conference in the American capital (see above story).
Drugs & Clinical Trials
Care Advice
Are we clueless in caring?
It was always going to be the case that “crisis at the point of care” was going to be felt first of all at the informal points where non-professional caregivers are increasingly left to feel the brunt of spending cuts and shortfalls in coordination of supply and provision of training. We are seeing this reflected in the increasing number of stories in our content feeds, such as this one recently from the UK’s Guardian, with some useful links detailing several of the support services that are available, even if not everyone is in a position to access those services.

What is emerging is a growing and collective sense that too many people are approaching a point where they simply do not see how they can cope. Where coping comes easier, it would seem from stories like this one on the Huffington Post website, is where caregivers find the focus and determination to make tough decisions as early as possible, in part to involve the loved one while their own focusing potential endures, but also to create a climate of gradual change.

Working together to agree the potential “where” in determining an appropriate care home facility is one example, deliberately leaving for another time the question of “when”.

NFL clinches memory care partnership
A heartening story of industry-community partnership emerges from Florida in this story, as reported in BloombergBusiness. The NFL Alumni Association, representing the interests of retired players in the USA’s National Football league is linking up with Validus, a Tampa-based specialist builder of senior living communities and Piper Jaffray, a full-service investment bank, in a deal worth over $1 billion dollars to build 33 assisted living facilities over the next five years – in theory, a facility in every major city in which the football league has a franchise. The NFL has become something of a specialist in cognitive impairment as a result of class action litigation in matters of traumatic brain injury, and is continuing its support for retired players by creating empathetic environments designed to be especially comfortable for their veterans.

Alzheimer's Care Advice
And Finally…
Bouncing into history in a noble cause, extreme pogo stick champ Jack Sexty, a native of Bristol, UK, saw off two American challengers and bounced non-stop for over ten hours: that meant more than 88,000 bounces (for people who like their mental arithmetic) along the way to raising money in honour of a family member who is living with dementia. Jack set a world record and is currently more than 10% towards his funding target of £2,000, which readers can help him reach by bouncing via this link to the Virgin moneygiving site.
More Alzheimer’s Disease Feeds on CurationHealth
Depression, Stress & Coping with Alzheimer’s
Alzheimer’s Care Advice
Alzheimer’s Lifestyle Issues
Latest Alzheimer’s Medical Info
Drugs & Clinical Trials
Medical Devices & Alzheimer’s
Tweets of the week twitter logo
DementiaToday (@DementiaToday)
Enriched Blood Cells Preserve Cognition in Mice With Features of Alzheimer’s Disease - # alzheimer #dementia
Ian Kremer (@LEAD_Coalition)
Living with #dementia podcast: asking for help when needed via @alzheimerssoc #Alzheimers @ShowoffByDesign @ADHD_Hope
Dr Shibley (@dr_shibley)
This is the job spec for a Dementia Advisor. There is no way how they're comparable to clinical nursing specialists.…
Ian Kremer (@LEAD_Coalition)
If person-centered care begins with dignity. #dementia #Alzheimers @DementiaUK @NAACP @ImWhitneyBlack @c_kraack
Debbie Goffa (@DebbieGoffa)
Alzheimer’s spurs the fearful to change their lives to delay it:
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About Alzheimer’s Insights
Alzheimer’s Insights is an online newsletter created for consumers -- primarily patients and carers -- who live with the challenge of Alzheimer’s disease. Based upon intelligent search algorithms that scour the Internet for the most read, relevant and useful stories from around the world, it is curated and published each Tuesday by a team of health and publishing experts.
Tam McDonald  
Tam McDonald Senior Curator
A publishing professional with three decades of experience in health, hospitality and financial services publishing. His interest in the human brain goes back to his university days of studying philosophy. His commitment to securing the very best information about health matters goes back to his decade as a carer.
Explain This!
Time for a non-care, non-medical question, but maybe the biggest one for caregivers who are feeling the pinch. There is all this talk about more funding for proper care, but where is the money going to come from?
Click here to find out
Looking ahead…
Issue 45 21 July 2015
Expect a torrent of announcements on all the latest research as the world’s biggest Alzheimer’s conference takes place over six days in Washington DC. INSIGHTS will be bringing you all the breaking news.
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