Your voice is at the center of NHF’s CVR. This community-powered registry will help researchers understand what it really means to live with a bleeding disorder and how current treatments, therapies, and policies affect the community. CVR will collect information from the people directly affected: people with bleeding disorders, their parents, siblings, partners, and caregivers.
People who participate in CVR will share information consistently over several years through surveys. This will allow researchers to better understand how bleeding disorders affect individuals and their family members across their lifespan. It will also help participants understand their individual situation and how a bleeding disorder affects their life.
The confidential, deidentified aggregate data gathered through CVR will ultimately contribute to the goal of improving clinical outcomes and quality of life and identifying research questions important to the community.
There have been many projects on the effects of a bleeding disorder on a person’s life. However, they have either been narrow in scope or duration, and/or relied on provider-reported data.
NHF believes the viewpoint of affected individuals and families must be included in everything that can potentially impact their lives. CVR is the first community-powered registry that will gather information directly from affected individuals and their family members.
CVR will enable researchers to gain deeper insight into such topics as:
- The effect of HTC care on the community
- Mental health issues
- Family dynamics
- What issues helps you take your medications as prescribed and what things get in your way or prevent you from sticking to your treatment plan?
- The effectiveness of medical marijuana and other non-opioid treatments for pain
The confidentiality and security of your information is NHFs highest priority.
Advarra Institutional Review Board (IRB) has reviewed CVR and ensured it meets the highest ethical, privacy, and confidentiality standards.
CVR was also granted a Certificate of Confidentiality (CC-OD-20-427). Certificates of Confidentiality (CoC) are issued by the National Institutes of Health to protect identifiable research information from “forced or compelled disclosure”. A CoC allows CVR to refuse to disclose identifying information on research participants in civil, criminal, administrative, legislative, or other proceedings, whether federal, state, or local. This applies to information that, if disclosed, could have adverse consequences for participants, such as damage to their financial standing, employability, insurability, or reputation. By protecting researchers and institutions from being compelled to disclose information that would identify research subjects, CoC help to minimize risks to participants by adding an additional level of protection for maintaining confidentiality of private information.
CVR data is stored with ArborMetrix, an independent outside organization that specializes in data collection, visualization and measurement of clinical trends and outcomes. ArborMetrix provides technical expertise including significant security protections to mitigate the risks associated with data loss, corruption and/or breaches including, but not limited to, industry standard security measures to encrypt sensitive personal data both in storage and transmission, and logical database systems that segment data to further prevent identifiability.
Furthermore, to maintain your anonymity, the information collected in CVR is and will always be reported in a de-identified and aggregate manner. This means that personal identifiers such as name and date of birth are removed and replaced with a number. Then, all information is gathered together and reported in grouped (aggregate) manner. An example of aggregate data is: 25% of 1000 CVR participants reported a pain level of 5 in a scale from 0 to 10.
And lastly, you can rest assured knowing that NHF or CVR will never share your personal information with any third parties for marketing or any other purposes.
Confidentiality is critical to NHF. We will always work hard to earn and maintain your trust.