patient
Prajwal Dhakal, MD
Dhakal, Prajwal
Clinical Assistant Professor of Internal Medicine
University of Iowa Health Care
Online Profile:
Evaluation of the Quality of Life and Treatment Experiences of Patients with Paroxysmal Nocturnal Hemoglobinuria
The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like to have, and be treated for, PNH. No medical treatment of any kind will be given as part of this study.
Suneet Agarwal, MD, PhD
Agarwal, Suneet
Co-Program Leader for the Stem Cell Transplant Center, Dana-Farber/Boston Children's Cancer and Blood Disorders Center & Associate Professor of Pediatrics, Harvard Medical School
Boston Children's Hospital
Online Profile:
2023 AAMDSIF Patient and Family Conference in Dallas, TX
Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern.
Event Date:
Sat, 11/04/2023 - 9:30am (EDT)
Bone Marrow Disease(s):
Conference Event Type:
Health-Related Quality of Life and Vulnerability among People with Myelodysplastic Syndromes: A US National Study
Key Points
In MDS, health-related quality of life (HRQoL) was worse for vulnerable participants and those with worse prognosis.
Lower-risk MDS was associated with better HRQoL, but this relationship was lost among the vulnerable.
What is the IPSS-M for MDS?
Addressing Barriers and Challenges to Patient Care - 2023 Omaha Patient and Family Hybrid Conference
The patient panel discusses this essential topic: Barriers and Challenges to accessing care. Learn their techniques for overcoming these barriers in this session from the Patient and Family Conference.