As the premier advocacy organization for patients with immune thrombocytopenia (ITP) and other platelet disorders, the Platelet Disorder Support Association (PDSA) is committed to developing an informed community of ITP patients, caregivers, clinicians, researchers, and industry partners. PDSA’s 2016 National ITP Patient Conference will deliver the valuable and relevant information these key stakeholders seek: evidence-based information on ITP, its causes, treatment options, potential side effects of various treatments, standards of care, as well as an in-depth understanding of PCOR/CER. The result will be a better-informed ITP patient community, one which is prepared to make healthful decisions regarding its medical care and treatment options, and one which is better able to participate in PCOR/CER. In addition, PDSA will actively engage the attending patient community in conference sessions, patient-clinician conversations, and a Patient Advisory Committee to help inform our new PCOR framework and priorities.
By engaging key stakeholders in a collaborative process, the projected output from this project will lead to the development of research questions that are relevant to the ITP community and that have the potential to make a real-world difference in healthier outcomes. ITP is the most common autoimmune bleeding disorder, yet it is unknown to most people. It affects all ethnic groups and people of all ages, from babies to the elderly. If their disease is chronic, patients face a lifetime of serious health issues, risk of bleeding, fatigue, impaired quality of life, and economic impact due to the high cost of treatments and inability to work.
However, because of the development of a variety of treatment options, many ITP patients are able to live a better life. Therefore, there is a need to focus on educating them about treatment options and available resources. Our goals are to engage our patient community in learning about ITP; to encourage their involvement in reaching desired health outcomes through the development of a research framework and priorities; and to arm them with useful information, such as a list of questions every ITP patient should ask their healthcare provider, and a physician referral list of doctors in the United States who specialize in ITP.
Project collaborators include a stakeholder group of patients, caregiver, clinicians, and researchers. The clinicians and investigators are the key opinion leaders in ITP patient care and research, including members of the Pediatric ITP Consortium of North America (ICON). Both adult and pediatric patients and caregivers are represented.