Survey link: https://redcap.isth.org/surveys/?s=NXKK99YPMWJWMYRC
This is an international survey to understand the current practices and perspectives of hemophilia providers worldwide in diagnosing Women and Girls with Hemophilia A (WGwHA) in regards to using one stage assay (OSA) versus chromogenic assay (CSA).
Purpose: The purpose of this survey is to collect data regarding whether hemophilia providers in different centers use OSA or CSA in diagnosing WGwHA, to assess various parameters for CSA including cost, availability and other challenges.
Rationale: There is published literature that documents OSA:CSA discrepancies in males with mild to moderate hemophilia, and that patients with lower factor levels by CSA have more bleeding tendencies, leading to change in Hemophilia severity assignment and modification of treatment practices based on CSA values. As such literature evidence is sparse in WGwHA, collection of information on the global practices of Hemophilia providers in utilizing OSA versus CSA in diagnosing WGwHA and assessing the challenges with doing CSA for diagnosing WGwHA, will help to generate consensus recommendations and evidence-based guidelines for the future, as well as, future prospective studies in this unique patient population.
Based on your experience, we would like to invite you to participate in this survey. You can refuse to answer any questions asked or written on any forms. Your participation in this study is voluntary. We are available to answer any questions that you may have, and can be reached via the contact information provided below. This survey should take 10-20 minutes to complete. This research poses no risks beyond those encountered in daily life.
Thank you for your consideration.
IRB Approval: This survey was approved by the University of Texas Health Science Center, Houston, Texas Institutional Review Board, protocol HSC-MS-24-0228.
Consent and Confidentiality: Your continuation in the survey implies your consent. In addition to your survey responses, your work email will be collected to ensure we have reached the correct individuals. This personal information will be kept confidential and subsequently deleted from our database once it is no longer required to meet the research objectives. Only members of the research team will have access to the data. This could include external research team members. All the data will be securely stored in a password-protected database. After completing the research study, the remaining data will be kept as long as required and then destroyed as per UT Southwestern policy. Published study results will not reveal your identity. There are no costs to you and you will not be paid to take part in this study.
Lakshmi Srivaths MD
University of Texas Health Science Center, Houston, Texas
Joanna Larson NP
University of Texas Health Science Center, Houston, Texas
Karin Fijnvandraat Samantha Gouw Lilianne van Stam
Amsterdam University Medical Center, The Netherlands
Jesus Ardila MD
Universidad del Valle, Colombia
Miguel Escobar MD
University of Texas Health Science Center, Houston, Texas
On behalf of the ISTH Factor VIII, Factor IX and Rare Coagulation Disorders
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Rebekah Perry
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