NATIONAL SYMPOSIUM ON
ANEMIA RENAL RESEARCH

THE PATIENTS VOICE

JULY 14th, 2019, BETHESDA, MD

PLEASE JOIN US AND REGISTER

This conference is targeted to ESRD patients and stakeholders (including family members, clinicians, researchers, and innovators) who want to improve anemia management strategies through patient-driven research. Historically, patient engagement has been noticeably absent in the design phase of most CKD research studies. The attendees of this symposium will bridge that gap by participating in a transparent consensus-building process driven by patients, caregivers, and health care providers. The resulting research agenda will ensure that resources are invested in patient outcomes and the achievement of patient goals.
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The National Symposium is the culmination of a two-year long initiative led by the Medical Technology and Practice Patterns Institute. At the end of the Symposium, an integrated list of research priorities and potential strategies to improve dialysis care in real-world, clinical settings will be finalized. A number of recommendations, corresponding to the consensus on priorities, on research design, data collection, reporting and dissemination of research results, anemia management policy making, and patient education. Deliverables will focus on informing future research, policy, and clinical practice.
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The National Symposium will be held on the campus of the National Institutes of Health in the Conference Center of the William H. Natcher Building (Building 45). The NIH campus is located in Bethesda, Maryland, a northwest suburb of Washington DC. The campus is accessible by a Metro Red Line stop (Medical Center). Visitor parking is extremely limited on the NIH campus so it is recommended that attendees take either public transportation, cabs or Ubers/Lyfts. For attendees coming from out-of-town, the official hotel of the Symposium is the DoubleTree Hotel in Bethesda
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CONFERENCE PARTNERS

Funded Through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN-6929)
Conference Host

Conference Host

Presenting Sponsor

Presenting Sponsor

Engagement Partner

Engagement Partner

TOPICS TO BE COVERED AT THE SYMPOSIUM

Quality of Life

Quality of Life

Treatment with ESAs and Iron

Treatment with ESAs and Iron

Blood Transfusion

Blood Transfusion

Other Treatments of Anemia

Other Treatments of Anemia

Anemia in Subgroups

Anemia in Subgroups

Quality of Anemia Care

Quality of Anemia Care

The Future of Anemia Treatments

The Future of Anemia Treatments

Anemia Management Priority Topics

Anemia Management Priority Topics

PCRP MEMBERS

Patient-Centered Research Partners (PCRP) Conference Planning Committee Members

This conference will incorporate the patient voice and perspective into all aspects of the consensus building regarding optimal anemia management strategies. This voice, the Patient-Centered Research Partnerships (PCRP), will be comprised of patients, care practitioners, and other stakeholders to build community and connections. Discussions among this partnership serves as the vetting mechanism for identifying potential candidate metrics for optimal anemia management strategies. In the second year we will focus on challenging our PCRP to build an action plan that’s necessary to ensure use of optimal treatment metrics and share this knowledge with all renal community stakeholders.  The PCRP participants at the conferences will include a broad spectrum of dialysis patient and stakeholder partners including patients’ families, caregivers, physicians, nurses, researchers, pharmaceutical companies, FDA and CMS regulators, renal data experts, NIDDK, and AHRQ.

Elizabeth Jones, MBA, HRM

Elizabeth Jones, MBA, HRM

Social Worker
Elizabeth Jones MSW, LCSW, FNKF has been a nephrology social worker for 27 years. She works at Sterling dialysis center and is also the divisional lead social worker for DaVita Atlantic Stars. She is a member of the Dialysis Patient Citizens Education Center Advisory Board.
Kathi Niccum EdD

Kathi Niccum EdD

Patient Advocate
Kathi Niccum, EdD, is the Education Director for the Dialysis Patient Citizens (DPC) Education Center.
Gigi Shafai, Pharm.D.

Gigi Shafai, Pharm.D.

Director
Director of Medical Affairs Akebia Therapeutics, Inc.
Franca M. Iorember, MD

Franca M. Iorember, MD

Physician, Provider
She has a passion for caring for children with kidney disease.
Alice Hellebrand, MSN, RN, CNN

Alice Hellebrand, MSN, RN, CNN

Nurse
Alice Hellebrand MSN, RN, CNN is the 2017-2018 ANNA National President and CNO/Senior Vice President for Dialyze Direct. She has over 25 years experience in Nephrology Nursing, is widely published and a national speaker on nephrology and leadership related topics
Derek Forfang

Derek Forfang

Patient
Derek is a 20 year ESRD patient and is representing the National Forum of ESRD Networks
Andy Howard MD

Andy Howard MD

Physician, Provider
Metropolitan Nephrology Associates
Rodrigo Refoios PhD

Rodrigo Refoios PhD

Innovator, Researcher
Senior Director, Value Evidence Leader – Neurosciences and Cell & Gene Therapy GSK
Andrew Conkling

Andrew Conkling

Patient
I am a 14 year dialysis patient.
Kelli Collins, MSW

Kelli Collins, MSW

Patient Advocate
Patient Advocate
David M. White

David M. White

Patient
American Assocation of Kidney Patients, Kidney Health Initiative and Veterans Transplantation Association Board of Directors Member Chair, Patient-Centered Outcomes Research Institute Advisory Panel on Patient Engagement National Committee for Quality Assurance Patient Partner. I am fiercely committed to living my best life by helping others.
Debra Null

Debra Null

Nurse
Retired registered nurse. Home nocturnal hemodialysis for the past 4 years. Dialysis started May 2013.
Dori Schatell, MS

Dori Schatell, MS

Educator
Dori is passionate about giving patients and families the tools they need to understand kidney disease and its treatment, take charge of their care, and live as fully as possible.
Andrew Narva MD

Andrew Narva MD

Provider, Researcher
Director, National Kidney Disease Education Program
Deborah Brommage, MS, RDN, CSR, CDN

Deborah Brommage, MS, RDN, CSR, CDN

Patient Advocate
I am a registered dietitian/nutritionist and Senior Scientific Director, Kidney Learning Solutions at the National Kidney Foundation
Brian Bankes

Brian Bankes

Educator, Researcher
I love to educate the public on ESRD.
Jay Wish MD

Jay Wish MD

Provider, Researcher
Dr. Jay Wish. Professor of Clinical Medicine at Indiana University and Chief Medical Officer for dialysis at Indiana University Health has lectured and published extensively in the area of anemia in chronic kidney disease.
Nieltje Gedney

Nieltje Gedney

Patient Advocate
As Treasurer of the Board of Directors for Home Dialyzors United and a patient Ambassador for AAKP, I work untiringly towards an extraordinary quality of life for the dialysis community, with a focus on patient centered anemia management – patients are not algorithms and our individual health care needs must be addressed and met!!
Jennifer Martin

Jennifer Martin

Patient Advocate
Vice President, Program Development for the National Kidney Foundation
Amy Pai, Pharm.D, MHI, FASN, FCCP

Amy Pai, Pharm.D, MHI, FASN, FCCP

Clinician, Researcher
Amy Barton Pai is a nephrology-trained pharmacist and researcher who focuses on safety of intravenous iron products.
Kenneth Wilund, PhD

Kenneth Wilund, PhD

Researcher
Kim Bullock, MD

Kim Bullock, MD

Researcher
Associate Professor of Family Medicine Director of Community Health Division Project Director of HRSA Community/Health Policy Fellowships
James Kaufman, MD

James Kaufman, MD

Provider, Researcher
Mellar Davis,MD

Mellar Davis,MD

Provider, Researcher
Diana Clynes

Diana Clynes

Diana Clynes is the Executive Director for AAKP. She is responsible for implementing and executing the mission and national strategy for the Association.
Grant Perry

Grant Perry

Grant Perry is a patient advocate, journalist, digital media consultant and lawyer. Grant’s interests include Improving doctor-patient communications and patient engagement in “shared decision-making” with healthcare providers.

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