Background: Thrombotic thrombocytopenic purpura (TTP) is a very rare, life-threatening disorder that results in blood clots in the small blood vessels leading to its occlusion with consequent reduction of the blood flow to vital organs, including the heart, brain, and kidney. TTP prevalence is increasing worldwide. Data related to disease nature and local burden on the healthcare system in Gulf countries are not available. The main objective of this study protocol is to explore and identify the local burden (clinical and healthcare utilization) of acquired thrombotic thrombocytopenic purpura (aTTP) and understand the aTTP management pattern in the Greater Gulf region.
Methods: This multi-national, observational, retrospective study will extract data of aTTP patients from existing medical records. Fifty eligible aTTP patients are planned to be included from five countries in the Arabian Gulf region. Each patient’s record (either hard or electronic) will be assessed for data availability and quality. The primary outcomes of this study will be to assess the time to reach platelet normalization, clinical remission rate, mortality rate, rate of recurrence, and refractoriness to treatment.
Results: This protocol was reviewed and approved by the Institutional Review Board of the included centers and funded by Sanofi Genzyme, Gulf region. Our sample size calculation provided a total sample ranging between 40 to 60 patients to be included for data extraction. With this state of data scarcity and heavy healthcare resources utilization, courtiers of the Arabian Gulf region are facing local problems due to the significant disease burden on aTTP patients. The patient’s journey in the Gulf region is not previously described in the literature. Therefore, to understand the disease’s nature and local burden in this part of the world, we will collect data related to the patient’s journey and different clinical practices.
Conclusion: These data will help us discover our healthcare system’s weak points, address unmet medical needs, and implement healthcare resources in more practical and efficient methods.
Key words: Thrombotic thrombocytopenic purpura, TTP, aTTP, plasma exchange, gulf.
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