How Does the Registry Work?
Data Entry and Collection
Informed Consent
To take part in the HPP Registry, your doctor will assess your health and confirm that you meet the eligibility criteria. They will explain the purpose of the registry and your role in it. Once you’ve had a chance to ask questions and understand what participation involves, you will be asked to provide informed consent before any information is entered into the registry.
You can choose to stop participating at any time. This decision will not affect the medical care you receive.
Data Sharing
Your doctor will enter your data through a secure site into the Registry database.
Collected Information
Your information will be given a unique ID number, and only your doctor will know which data belongs to you. The registry does not collect information that identifies you, such as your name.
Collected Information
Once submitted, your data is reviewed for accuracy. This involves certain electronic checks (for example, to prevent errors like a 6-month-old being marked as pregnant) as well as manual checks by a Registry’s data management team member to ensure the data entered is accurate, consistent, and plausible. If the data entered is outside possible ranges, your doctor may be contacted to confirm the information.
Information Available for Research
Once the data has been reviewed, it will be available in the Registry for research into HPP. Information will not be used to identify individuals in research, but will be used as grouped information.