MDS observational study

• Research type

  Research Study

• Full title

  Treatment Burden and Preference Study among Patients with Lower-Risk Transfusion-Dependent MDS and Caregivers

• IRAS ID

  313756

• Contact name

  Aylin Yucel

• Contact email

  aylin.yucel@bms.com

• Sponsor organisation

  Bristol Myers Squibb Company

• Duration of Study in the UK

  1 years, 0 months, 0 days

• Research summary

  This is an international, cross sectional survey
  aiming to describe the humanistic and economic burden of patients with lower-risk (LR) transfusion-dependent (TD) myelodysplastic syndrome (MDS); and describe the humanistic and economic burden of caregivers of patients with LR-TD MDS. This study also will assess the preferences of patients regarding key attributes associated with different MDS treatments.

  This is a direct-to-patients survey conducted on online with approximately 800 adult patients from the United States (US), Canada, United Kingdom (UK), Germany, France, Spain, Italy and Japan who self-report to have been diagnosed with MDS by a physician, are considered Low risk, and have had at least 2 red blood cell (RBC) transfusions in the past 4 months
  The MDS Foundation will recruit for participants in the US, and the MDS Alliance will recruit for participants in other countries, including UK. Each foundation will begin recruitment by contacting their patient database in each country. As needed to complete the target sample, Cerner Enviza’s (formerly known as Kantar Health) CRO will supplement the recruit.
  No centers (No NHS centers in UK), no physicians are involved in the patients/caregivers enrolment.
  
  The study will have a total duration of 1 year

• REC name

  West Midlands - Edgbaston Research Ethics Committee

• REC reference

  22/WM/0123

• Date of REC Opinion

  19 May 2022

• REC opinion

  Favourable Opinion