Commitment to Confidentiality
The security of our participants' personal information is our highest priority. MyBDC’s protocol and patient agreement have been reviewed by Quorum’s Central Internal Review Board (IRB).
MyBDC does not share participants' name, address, or any other personally identifiable information. The data collected will have all personal identifiers removed so individuals cannot be identified (de-identified): names will be replaced with a code number. All the de-identified answers will be grouped (aggregated) from all MyBDC participants. Researchers will never have access to identified, non-aggregated information.
Participant data will be maintained by the National Hemophilia Foundation’s partner ArborMetrix. They take a variety of steps to keep all information collected during the study confidential. They provide:
- industry standard security measures to encrypt sensitive personal data both in storage and transmission
- logical database systems that segment data to further prevent identifiability
Confidentiality is critical to the National Hemophilia Foundation. We work hard to earn—and maintain—participants' trust.