Free registries aimed at better understanding, treating Alzheimer's

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According to Donna McGowan, the executive director of the Rhode Island Chapter of the Alzheimer’s Association, Rhode Island’s fifth leading cause of death is Alzheimer’s disease. Based on current trajectories, by the year 2050 it could rise to be the state’s number one killer. How can Rhode Island’s aging citizens resist this trend and discover new options for medical assistance?

Butler Hospital may have an answer, in the form of a registry that connects older Rhode Island residents with clinical research trials in the area that may provide them with medical guidance and treatment options, free of charge. By participating in these research projects, regardless of whether they have prior memory issues or none at all, volunteers for the Butler Hospital’s Alzheimer’s Prevention Registry will not only receive personal medical advice but may also contribute to the medical community’s knowledge of the disease. While no cure for Alzheimer’s currently exists, preventative measures and medication are still in the process of being developed.

“We are seeing an increasingly aging population, and through this type of research, will be we will be closer to finding out how to truly help [patients] and possibly have a world without Alzheimer's disease,” wrote McGowan.

Members of the registry will be given information regarding Alzheimer’s advances made at Butler Hospital, according to William Menard, the research operations manager for Butler’s Memory and Aging Program. The development of a blood-based marker of risk, gene testing, and taking images of a person’s retinas are all examples of Butler’s new methods of detecting Alzheimer’s and identifying those who would be most likely to develop it later on. In addition to new information, participants will be contacted regarding studies they may be a good fit for based on their personal and medical background.

How can you get involved?

All that’s required of participants is to be between the ages of 40 and 85. Signing up for the registry is done on a volunteer basis and is free-of-charge, and does not require any memory difficulties; simply filling out a 20-minute online questionnaire is all that’s necessary. The questionnaire will assess factors such as a family history of dementia and the participant’s age; based on this information, those registered will be contacted with studies that best suit their medical backgrounds and needs. This form, along with informational material on memory disorders, can be found at www.butler.org/memory/alzheimers-prevention-registry.cfm.   

Participation in the study is entirely voluntary, and is not mandatory to be included on the registry. Many clinical trials are conducted at Butler Hospital, but several are hosted at other organizations in the region; the number of visits, the length of the trials, and the guidance received all vary based on the individual trial.

What do these studies entail? Participants will be contacted regarding both existing and new studies - a good number are already listed on the Memory and Aging Program’s website, under the “clinical trials” tab. The trials are organized based on the patient’s current progression of Alzheimer’s, ranging from not having it at all for prevention studies, to having moderate Alzheimer’s to research the effects of developing medicines. Clinical trials may include trying out new brain scans, testing new medicines that may ease symptoms, blood and spinal fluid collection, cognitive testing, and much more.

Currently, approximately 1,600 participants are registered - Butler Hospital hopes to have 2,020 participants signed up by the year 2020, in order to address the growing need for Alzheimer’s care in Rhode Island. An increasing prevalence of the disease is present nationwide as well, according to Menard; data suggests that about 14 million people will be diagnosed with Alzheimer’s by 2050, with an estimated economic cost of $1.1 trillion. Currently, the number of patients in America sits at 5.8 million.

"Participants in these studies receive on-going guidance and are asked many questions to give the researchers and the participants an understanding of what is happening in their lives,” wrote McGowan. “These studies are vital in helping to try to create possible treatments as well as organic ways to try to stop the onset or slow the development of the disease.”

“Without studying the how's and why's of the disease and working with individuals as they live their lives, we will not be able to properly attack the task of trying to address a disease that has no cure,” she wrote.

Butler Hospital’s registry isn’t the only one in the state, either - a Rhode Island registry is also offered through Lifespan, and another is offered through the George and Anne Ryan Institute for Neuroscience at the University of Rhode Island. 

Lifespan’s registry, created in 2012, requires participants to be over the age of 50, to speak English, and to participate in a few brief memory assessments. Memory issues can range from nonexistent to mild, but those already suffering from a form of dementia are excluded. Registration information can be found at www.lifespan.org/centers-services/alzheimers-disease-memory-disorders-center/research-alzheimers-disease-memory/rhode.

The George and Anne Ryan registry at URI is free and open to all participants ages 18 and over. In addition to being matched for studies, participants will also receive regular updates about research findings via email. Registration can be completed at ryaninstitute.uri.edu/registry.

Alzheimer’s disease, the most common form of dementia, is a memory disorder that causes nerve cells in the brain to decline, which can impact memory and language capabilities as well as cognitive abilities. While the disease cannot be cured after its onset, treatment and prevention measures exist. Ongoing research efforts are a huge part of the battle to both combat the disease before it starts, and to develop better treatment methods for those already afflicted.

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