APDA Meets to Discuss Grants, Diversity in Parkinson’s Research, Support, and Care

APDA Grant Research

The American Parkinson Disease Association (APDA) recently hosted two groups of experts who assessed scientific projects vying for funding, and addressed diversity issues in Parkinson’s disease research and care.

The organization met with its scientific advisory board (SAB) to decide which grant projects it will fund for the 2019-2020 academic year. Grants are based on overall significance and field impact, appropriateness of the project’s chief investigator and scientific environment, and feasibility of the project’s proposed budget and end date. Funding decisions will be announced in August.

The APDA also hosted its first-ever Diversity in Parkinson’s Research Conference, which focused on needs surrounding the disease in diverse and under-served communities. Attendees included researchers investigating Parkinson’s in ethnic and minority populations, and clinicians who treat such patients.

Panel discussions included an overview of APDA diversity initiatives, research about biomarkers in diverse populations, disparities in Parkinson’s clinical trial enrollment, and what the field of hypertension can teach Parkinson’s investigators about access to diverse communities.

Currently, most Parkinson’s research focuses on relatively older white men, the APDA said. The organization wants to expand investigations to include more patients of varying ages, genders, races and ethnicities. It also wants more access among these groups for care, programs and services.

”APDA’s mission is to help everyone impacted by Parkinson’s disease live life to the fullest, and we mean everyone,” Leslie A. Chambers, APDA president and CEO, said in a press release.

The organization plans to establish an annual grant to support research focused on closing diversity gaps. For now, it offers an annual $50,000 post-doctoral fellowship, and multiple $75,000 research grants. The three-year $300,000 George C. Cotzias Fellowship supports early-career physician-scientists. In addition, the APDA awards its Centers for Advanced Research $100,000 each year to support PD investigations. (Visit this site for more information on APDA-funded research.)

”It’s so exciting to see the fascinating ideas outlined in the grant submissions,” said Rebecca Gilbert, MD, PhD, APDA vice president and chief scientific officer, of the current crop of proposals. “Proposed research projects included everything from ways of detecting a diagnosis of PD in the blood, to exploring ways that telemedicine can improve the lives of patients with PD. The SAB certainly had their work cut out for them and made some tough choices,” she said.

In addition to deciding who gets new grants, the SAB receives updates during annual meetings about previously funded research. During the May 16 meeting, for example, members were apprised of the latest research at the University of Alabama at Birmingham, where scientists are focused on advances in the role of brain inflammation in Parkinson’s development and progression. The SAB also heard from Washington University School of Medicine researchers studying imaging biomarkers for Parkinson’s.

David Standaert, a leading Parkinson’s researcher at the University of Alabama at Birmingham, also is the SAB’s chairman. He called the Diversity in Research Conference a “fantastic” first step toward finding answers.

”Together, I think we can do great things to make both our research and services more inclusive and accessible,” he said.

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A Preliminary Look at the Parkinson’s Disease Spectrum

The needs of each Parkinson’s disease (PD) patient varies because there is a large symptom diversity in the disease population. We may think of this diversity as a Parkinson’s disease spectrum: some people display little or no symptoms of a certain type while others describe those same symptoms as severe.
The spectrum is not yet fully defined. In this column, I offer suggestions for the spectrum’s definition and discuss how it may help patients and medical providers. There are six parameters in the PD spectrum I’ve conceptualized. If measured in a clinical evaluation, the spectrum could help us better understand the disease.
Professionals have divided the disease into the “shaking type” and the “rigid type.” Patients from both types range in symptom severity. It is likely that these two types fall on a spectrum with shaking and rigidity overlapping each other in some patients. Let’s make tremors the first parameter, and rigidity the second.
Some PD patients have autonomic muscle involvement such as reduced blinking, urinary flow issues, and bowel movement problems. Let’s consider decreased functioning of autonomic muscles as the third parameter.
Patients also fall on a spectrum of nonmotor problems such as declining cognitive function, loss of emotive control, and sleep problems — the fourth parameter.
Not to make the whole thing overly complicated, but fifth and sixth parameters must be added to paint a decent portrait of the PD spectrum — the person’s history (pre-Parkinson’s brain and motor/nerve activity), and their current and past rehabilitation and treatment plan.
In summary, these six parameters could paint the Parkinson’s disease spectrum:

Shaking symptoms (fine and gross motor) and associated pain/fatigue
Rigid symptoms (fine and gross motor) and associated pain/fatigue
Involuntary muscle changes
Nonmotor problems (cognitive, emotive, sleep)
Premorbid history (What was this brain used for? Includes nervous system, medical, and exercise histories)
Current and past rehabilitation and treatment plan

An example diagram for the prevalence and intensity of a single symptom or trait. (Graphic by Dr. C)
I think all Parkinson’s patients should be evaluated using these six parameters. If we could hold in our minds these parameters and see that they paint a large spectrum landscape of PD diversity, then it may be possible to improve the quality of life for all those afflicted with PD.
I have an unusual form of Parkinson’s disease so I fall on the fringes of the spectrum (see the diagram). Not only is my disease mostly “invisible” but it also took quite a bit of medical sleuthing to arrive at the correct diagnosis. I went through more than a dozen doctors and an equal number of medications before arriving at Sinemet (carbidopa levodopa). The results were remarkable, and I am so thankful for that.
Being out on the fringes of the PD spectrum has created, and continues to create, problems which I’ll address in the columns to come. Knowing that I fit into the fringes made sense. I shared the spectrum and my place on it with others, which helped them understand my atypical form of PD.
Readers fit into the spectrum in different ways. They can say, “I don’t have that symptom, but

Source: Parkinson's News Today