A5009722595- Hemoglobinopathies and Related Disorders
- Iron Metabolism and Disorders
- HIV/AIDS Research and Interventions
- Folate and B Vitamins Research
- Neonatal Respiratory Health Research
- Diabetes Management and Research
- Hyperglycemia and glycemic control in critically ill and hospitalized patients
- Pharmaceutical Practices and Patient Outcomes
- Palliative Care and End-of-Life Issues
- Pharmacological Effects and Toxicity Studies
Novartis (United States)
2019-2021
Tris Pharma (United States)
2021
Counties Manukau District Health Board
2021
Novartis (France)
2021
Starship Children's Health
2020
Auckland District Health Board
2020
Abstract Background Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are hallmark clinical presentation SCD have been associated with increased morbidity mortality. The Pain Diary- Self Report (SCPD-S) was developed as daily patient-reported outcome (PRO) measure primarily intended to capture the frequency severity SCD-related during outside SCPC. SCPD-S also examines impact an SCPC...
Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as crises (SCPCs). The Sickle Cell Pain Diary-Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years SCD. This study reports on the content validity SCPD-C.The SCPD-C was developed based a literature review, measurement expert input, patient advisory board including clinicians. Three rounds interviews (including both concept elicitation cognitive...
Abstract Background Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as crises (SCPCs). The Sickle Cell Pain Diary - Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years SCD. This study reports on the content validity SCPD-C. Methods SCPD-C was developed based a literature review, measurement expert input, patient advisory board including clinicians. Three rounds interviews (including both concept...