Academy Comments Nominating Parkinson's Disease for Future Evidence-based Practice Center Reports

January 31 2019

Kara Winchell, M.A.
AHRQ Effective Health Care Program
c/o Portland VA Medical Center (R&D 71)
3710 SW U.S. Veterans Hospital Road
Portland, OR 97239

Re: Nomination for Future Evidence-based Practice Center Reports

Dear Ms. Winchell,

The Academy of Nutrition and Dietetics (the "Academy") appreciates the opportunity to submit comments to the Agency For Healthcare Research and Quality (AHRQ) related to its January 3, 2019 "Call for Nominations for Future Evidence-Based Practice Center Reports." Representing more than 100,000 registered dietitian nutritionists (RDNs),1 nutrition and dietetic technicians, registered (NDTRs), and advanced-degree nutritionists, the Academy is the largest association of food and nutrition professionals in the United States and is committed to providing and documenting the effectiveness of nutrition care services to all populations. Academy members provide professional services such as medical nutrition therapy (MNT), as well as preventive services, in multiple care settings. We look forward to continuing to work with AHRQ to ensure that our members are effectively providing evidence-based nutrition services across all content areas.

The Academy recommends AHRQ authorize a review of nutrition risk factors for Parkinson's Disease. The impacts of this disease on patients, caregivers, the health care system and the economy are significant and are anticipated to increase exponentially in the near future.

A. Topic Suggestion (including populations, interventions and outcomes)

The Academy suggests a series of questions related to Parkinson's Disease should be considered: What dietary risk factors can be identified for Parkinson's Disease (PD) and its progression? Should medical nutrition therapy provided by registered dietitian nutritionists be provided as a standard in physician offices and care centers treating patients with PD? What differences in risk factors can be identified between different ethnic, racial and gender groups? What differences in risk factors can be identified between early onset PD and late onset PD? What are the effects of the malnutrition status typical of seniors on PD risk and progression? Is there research on best practices in service delivery and setting?

B. Importance of Suggested Topic

Preliminary data suggest various lifestyle factors, including nutrition, may affect risk and progression of PD. As of 2010, data indicate the direct economic burden of PD is nearly $15 billion, while indirect costs such as reduced employment add another $6.3 billion.2 PD is also associated with substantial increases in comorbidities, hospitalization and nursing home placement.3 The medical and economic burdens on caregivers are substantial as well.4 With the 2010 prevalence expected to double by 20405, the importance of evidence to support affordable therapies that prevent, delay onset or reduce symptoms of PD cannot be overemphasized.

The health care costs and associated adverse impacts are increased by the fact that post-diagnosis life expectancy is similar to adults without PD. Given the overall aging of the population, prudence dictates that the health care system be proactive, not reactive. Accordingly, health care providers should receive key information to secure the best possible outcomes for their patients as well as the health care system as a whole.

C. Reasons for Suggesting this Topic

The interest of our members is noteworthy and cuts across various practice settings and specialties. In addition, like many Americans, some of our members have been personally impacted by PD. Some members have also written monographs and conducted research in this area. We are also broadly concerned about the provision of nutritional information for Parkinson's disease that is not evidence-based nor appropriate to the individual.

D. Target Date or Timeline

We are not under any specific timeline or target date.

E. Expected Impact of a New Evidence Report

It is essential that patients receive evidence-based recommendations appropriate to their needs from qualified providers. Currently, without a standard protocol, provider qualifications and recommendations may vary widely. Such recommendations may be based on suppositions, false or incomplete information, or be absent when counseling is indicated and potentially beneficial to the patient. Interest from Academy members suggests their patients and their practice could benefit from an objective evidence review. While there may be evidence gaps, it is important that an authoritative agency synthesize and compile the evidence to-date into a single document. Our members could also benefit from any clarification of best practices in service delivery and setting.

F. Expected Uses of a New Evidence Report

An evidence report could be critical to issuance of a formal Academy practice guideline, which would be expected to optimize patient outcomes via PD prevention or delay of symptoms.

G. Expected Dissemination of the Report

The Academy would likely disseminate the report’s information via inclusion in a published article in our peer-reviewed publication, the Journal of the Academy of Nutrition and Dietetics. Additionally, each of several select dietetic practice groups would likely post the report's information on the member-access portion of their respective websites.

H. Other Stakeholders Who Could Use an Evidence Report

We have not been in contact with other stakeholders. But other organizations, such as the American Neurological Association, various patient and caregiver advocacy organizations, as well as industry groups such as the American Health Care Association, may also benefit from such an evidence report.

I. Conclusion

The Academy appreciates the opportunity to comment on the proposed information collection for the "Call for Nominations for Future Evidence-Based Practice Center Reports." Please contact either Jeanne Blankenship at 312/899-1730 or by email at or Mark Rifkin at 202/775-8277, ext. 6011 or by email at with any questions or requests for additional information.

Jeanne Blankenship, MS, RDN
Vice President
Policy Initiatives and Advocacy
Academy of Nutrition and Dietetics

Mark E. Rifkin, MS, RD, LDN
Consumer Protection and Regulation
Academy of Nutrition and Dietetics

1 The Academy approved the optional use of the credential "registered dietitian nutritionist (RDN)" by "registered dietitians (RDs)" to more accurately convey who they are and what they do as the nation's food and nutrition experts. The RD and RDN credentials have identical meanings and legal trademark definitions.

2 Kowal SL, et al. The current and projected economic burden of Parkinson's disease in the United States. Mov Disord. 2013 Mar;28(3):311-8.

3 Fredericks D, et al. Parkinson's disease and Parkinson's disease psychosis: a perspective on the challenges, treatments, and economic burden. Am J Manag Care. 2017 Apr;23(5 Suppl):S83-S92.

4 Martinez-Martin P, et al. The long-term direct and indirect economic burden among Parkinson's disease caregivers in the United States. Mov Disord. 2018 Dec 27.

5 Kowal SL, et al.