Dear Addy: HFA Community Research Portal

Dear Addy,
What is the HFA Community Research Portal and why is it important to me?
Research Meets Advocacy

Dear Research,
The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is a platform to collect data for research on the bleeding disorders community. HFA and other researchers will use this data to serve the needs of bleeding disorder patients and their families more effectively.
Here are a few things to know about the Portal:

  • Who can participate?

    • Currently, the Portal is open to the following individuals:

      1. Any adult with a diagnosed bleeding disorder.
      2. Caregivers of a child (under age 18) with a diagnosed bleeding disorder or a daughter who is a potential bleeding disorder carrier. (Caregivers would engage in the portal on the child’s behalf.)
      3. Any adult female with bleeding disorder symptoms who has a child with a bleeding disorder and/or knows, or believes, that she is a carrier of a bleeding disorder gene.

  • Who will have access to the data?

    • Without your permission, no one outside of the HFA Research staff will have access to your data. If you choose not to disclose your contact information (through privacy controls), all of the information you entered will be de-identified. Even if your privacy setting provides permission to access your contact information, all data are de-identified for privacy and security. HFA will never share your information with anyone without your permission.

  • Who controls my data?

    • You! The information you enter into the Portal is under your control. You control what information you provide, who has access to it, and how long your information is available on the portal.

  • What kind of data will HFA collect on the HFA Community Research Portal?

    • HFA will collect privacy-assured, health information from bleeding disorders patients through surveys and other means via the Portal. Through the Portal, HFA can conduct medical research as well including collection of medical samples and genetic sequencing. HFA will seek and develop meaningful collaborations with researchers to better understand the impact of bleeding disorders with other medical conditions and use the Portal for this research.

  • Where do find more information about HFA’s Research Portal?

With HFA’s Research Portal, you will have opportunities to participate in research in one secure location where your responses will directly contribute and impact future health outcomes for those with bleeding disorders.
You can always reach out to the HFA Research Team if you have any questions about the Research Portal or any of HFA’s Research initiatives.

Have a question for Addy? Click HERE. Your name will be changed in the response.
HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.