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Tech Support for Parkinson’s Nutrition
A study is underway at URI to assess how technology could help people with Parkinson’s disease and their caregivers more easily access relevant nutrition information.

October 29, 2018

“NUTRITION ISN’T USUALLY included in the care plan for Parkinson’s until the end of disease progression,” says Dara LoBuono, a Ph.D. candidate in nutrition and food sciences at URI. “For example, when a patient needs tube feeding.” But side effects experienced by people with Parkinson’s disease, both from the disease itself and from the medications used to treat it, often affect the desire and ability to eat—and in turn, nutrition.

To help guide people with Parkinson’s in healthy eating, the Lipid Lab at URI recently began a new study to determine how technology—such as social media forums for sharing tips and recipes, or Skype sessions with a nutritionist—might help support dietary interventions and nutrition management for people with Parkinson’s. Study coordinator LoBuono is conducting the research alongside principal investigator Ingrid Lofgren, an associate professor in nutrition and food sciences.

“People with Parkinson’s can experience constipation, decreased appetite or binge eating, weight loss, changes in taste, difficulty swallowing, and other side effects that end up playing a role in their food choices or make it difficult to manage proper nutrition,” LoBuono says. She notes, for example, that a person on a pureed diet may develop a tendency toward ice cream and mashed potatoes, while someone who loses their ability to detect thirst could become at risk for dehydration.  In addition, diet can have an impact on certain medications—such as the way carbidopa-levodopa, commonly used in Parkinson’s treatment,  is absorbed less effectively if taken in conjunction with too much protein. “Managing nutrition can become challenging, especially for the caregiver who handles all the cooking and grocery shopping,” says LoBuono.

Associate Professor Ingrid Lofgren (left) and Ph.D. candidate Dara LoBuono (right) are conducting the study at URI’s Lipid Lab.

The team was inspired to find a solution that would make it easier for people with Parkinson’s and caregivers to keep up with nutrition information relevant to their needs, without adding additional demands on their time. “A lot of Parkinson’s treatments, such as speech therapy or physical therapy, are effective but time-consuming. Someone may go to therapy multiple days a week, plus have ‘homework’ or need to continue with maintenance exercises after training, on top of their doctor’s appointments,” says LoBuono. “We wanted to find out what caregivers and people with Parkinson’s disease already know about nutrition, and how they access that information, as well as their willingness to use technology, so that we can understand how better to support their needs.”

The study, “Tailoring Digital Health to Improve the Nutrition and Health of People with Parkinson’s Disease and Their Caregivers,” is currently enrolling people with Parkinson’s in tandem with their caregivers for a series of four assessments (one in person, and three by phone) that include interviews about diet, exercise, digital competence, and disease burden. Participants will complete two 24-hour dietary recalls, detailed logs of food and beverages consumed in a 24-hour period. At the conclusion of the four sessions, each participant receives tailored dietary recommendations from a registered dietitian, based on their assessment data.

Ultimately, the study will help inform nutrition interventions that can improve the health trajectory of people with Parkinson’s. “The Parkinson’s community is a really motivated group of people,” says LoBuono. “They have a lot of interest in learning changes they can make to improve diet and health, and it’s rewarding to be part of that.”

Those interested in participating can contact LoBuono at lipidlab@etal.uri.edu or 401.874.2785.


Butler Hospital Study

SURE-PD 3

This a research study to test whether a treatment that raises levels of the antioxidant urate can slow the rate of Parkinson’s disease progression over time. The treatment is a compound called inosine, which the body turns into urate. SURE-PD 3 hopes to enroll 270 subjects across 60 sites in the United States. For more information about this study please contact study coordinator Marycia Malloy/Courtney Bodge, PhD 401-455-6669


Rhode Island Hospital Studies

Fatigue Study

Dr. Akbar at Rhode Island Hospital is conducting a study of people with Parkinson’s who complain of fatigue. This study involves filling out a questionnaire and having an fMRI. You cannot have had DBS.

Wearing-off Study

Do you have Parkinson’s disease and experience wearing-off throughout the day? If so, there is a research study evaluating the effectiveness of an add-on once-daily dopamine agonist medication to improve the off-time and dyskinesia.

  • You must have 2.5 hours of off-time (total throughout the waking day)
  • You cannot be on a dopamine agonist currently (like, pramipexole, ropinirole, rotigotine; if you are, you have to stop it for  30 days to participate)
  • You cannot have had DBS

DBS – Benefits & Side Effects Study

Do you have Parkinson’s disease and Deep Brain Stimulator implanted?  If so, you could help us better understand the benefits and side effects of DBS.  One study is a simple questionnaire that takes about 15 minutes.

DBS & Speech

This study is evaluating the DBS effects (positive or negative) on speech.

For more information on these four studies please contact Dr. Akbar’s secretary Julissa  at jdelacruz2@Lifespan.org or call 401-444-6528.


BTC of Lincoln

Dr. Jim Whalen from BTC of Lincoln is seeking volunteers for a  clinical research study for people with Dementia with Lewy Bodies or Parkinson’s Disease Dementia who frequently exhibit REM Sleep Behavior Disorder-a serious condition where a person physically and/or vocally acts out their dreams.

Participants may qualify if they:

  • Are at least 50 years of age
  • Have a diagnosis of dementia with Lewy Bodies (DLB) or Parkinson’s disease dementia (PDD)
  • Experience REM sleep behavior disorder (symptoms include abnormal sleep behaviors such as acting out or vocalizing dreams)
  • Study-related medical care is provided at no cost. Compensation for time and travel may be available. For more information please visit http://studies.btcsites.com/rbd/ or call 401-305-5200.

Laboratory for Neural Computation and Cognition at Brown University

This research is under the direction of Dr. Michael Frank, Professor at Brown University

If you participate in this study, you’ll complete computer tasks designed to investigate learning, working memory, and decision making. They are currently looking for both individuals who do have PD and who do not have PD. Spouses are encouraged to apply!

If you have Parkinson’s Disease and wish to participate, please contact your neurologist. This is an opportunity to further research, not a treatment option. If you do not have PD and would like to help further Parkinson’s research please contact our lab.

To participate, you must: be healthy; be older than 18 years of age; and have no medical history of brain injury, mental/psychiatric/psychological disorders, or drug or alcohol abuse. We may ask you for additional information about your medical history to verify that you are eligible.

This study is being held in the Metcalf Research Laboratory (190 Thayer St). To learn more about this research, please call or email the Laboratory for Neural Computation and Cognition: 401.863.6871, brown.lncc@gmail.com


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