Skip To Content
Kaiser Permanente Center for Health Research Visit our Website
Visit out Website ยป
  • A woman working at a coffee shop wearing a mask.

  • Research Study Registry Consent

The Kaiser Permanente Northwest Center for Health Research (CHR) is creating a contact list or registry of people who are interested in learning more about participating in research, including COVID-19 and other vaccine and treatment studies, and how to take part in future studies.

To learn more about the registry, please read the information below; then you will have the opportunity to join.

Why should I join the registry?

The COVID-19 pandemic has created a great need for research on how to treat and prevent the disease. It has also highlighted the need for clinical research on all kinds of diseases. Such research can only be done if people volunteer to be in the studies. CHR has been part of Kaiser Permanente Northwest since 1964 and the doctors, nurses, and scientists in CHR are devoted to improving health for ALL. We only offer participation in studies that we think are safe and valuable. This registry is open to all Kaiser members and those who live in the Portland community and surrounding area.

We invite you to join the registry because research needs people from all walks of life to participate. COVID-19 has greatly affected Black, Latino, Indigenous and Other People of Color and their communities. These communities are also at increased risk of other diseases. To successfully stop the spread of the coronavirus that causes COVID-19 we need vaccines and treatments that are safe, effective, and accessible to EVERYONE. To guarantee this, it is very important that participants in these studies include Black, Latino, Indigenous and Other People of Color. We therefore want to make sure that these communities are represented in this registry so that everyone can learn about potential studies of COVID-19 and other diseases and be able to participate in these studies if they want.

Agreeing to be in the registry to hear more information does not mean you are agreeing to be in a study. When we call you, we will explain everything you will need to know to decide if you want to participate in a study or not.

Pleas see our frequently asked questions for more information »

Thank you for considering being a part of COVID-19 research and other important research at the Center for Health Research.

Who can be in this registry?

  • People who are 18 years and older.
  • People in good health, or with stable medical conditions, who live in the greater Portland area.
  • People who can travel to the KPNW Center for Health Research clinic, or other KPNW locations, in Portland for research study visits (for most studies).

What is the purpose of this registry?

Upcoming research studies, particularly those related to COVID-19, will likely need to enroll many people in a short period of time. To help with recruitment for these research studies, we are keeping a database, or registry, of people who live in the greater Portland area and are interested in taking part in research studies, including ones related to COVID-19. We hope to enroll around 5,000 KP members and non-members from the Portland area.

The information in the registry will be used to determine if you may qualify for any future research studies at Kaiser Permanente Northwest. If, based on the information you add to the registry, you may be eligible for a research study, we may mail or email you information about it or a study team member may contact you to tell you about the research study.

Stephen P. Fortmann, MD, a KPNW CHR Distinguished Investigator, is the Principal Investigator overseeing this recruitment registry. Upcoming research studies will be led by highly experienced KPNW researchers.

What about research for children?

With the success of COVID-19 vaccine studies in adults, studies of the vaccines in children are now in progress. We may be conducting vaccine or treatment studies in children for COVID-19 or other health conditions and so the registry allows parents and guardians to tell us if they want to be notified about studies that become available for children.

In this registry, if you are a parent/legal guardian you can let us know if you want to be contacted if we recruit for studies enrolling minors aged 17 and younger. You will not need to enter personal information about minors in this registry.

You can use the registry solely to let us know you want to be contacted about research studies enrolling minors without having to join the registry yourself.  You will need to provide your name and contact information.

What will happen if I join the registry?

If you are interested in joining the registry after reading this page, you will be given the opportunity to take an online survey. The survey will ask for general information about you including your age, current and past health and medications, and your line of work. You will be asked about your race, ethnicity, and gender identity. You can skip any questions you are not comfortable answering. If you start filling out the survey and decide you want to stop, you do not have to submit your information. Since some research studies are looking for specific groups of people, the survey questions are meant to help us match you to the best research studies for you.

We may review your electronic medical record (if you are a Kaiser Permanente member) to clarify or gather more information about your survey answers to see if you may be eligible for specific research studies. Information from your medical record will only be used to verify research study eligibility prior to contacting you and will not be used for research.

If a researcher at KPNW begins a research study related to COVID-19 or another important disease while you are in the registry, a KPNW study team member may contact you by mail, phone, or email to tell you more about that research study and see if you are interested in taking part. By entering the registry you are not making a commitment to participate in any research study.

You will be given the opportunity to let us know if you are interested in being contacted about possible participation in research studies for health conditions other than COVID-19.

How will my information be handled & secured?

We will keep your survey responses indefinitely.

The information in the registry is maintained by the registry Principal Investigator and designated registry team staff. Only designated Kaiser research staff will have access to the information in the registry. All electronic information is stored securely behind the KPNW CHR firewall and is password protected.

Your health information is protected by a federal privacy law, called HIPAA, that we must follow. Information that we collect and review for the registry is part of that protected health information. By joining the registry, you are giving us permission to collect and review your health information as described above.

We will hold all information related to you your participation in the registry confidential except when sharing the information is required by law. The investigator, and under certain rare circumstances, the Office of Human Research Protection (OHRP) and the Institutional Review Board (IRB), will be able to inspect and copy confidential registry-related records which identify you by name. This means that absolute confidentiality cannot be guaranteed.

What else should I know before deciding to join the registry?

Research study visits will likely be held at the KPNW CHR clinic on N. Interstate in Portland.

Future research studies may involve investigational vaccines, investigational medications, testing methods, prevention before and after exposure, surveillance of the extent of exposure in the population, and the like.

Research studies looking at vaccines and medications typically involve multiple blood draws and typically involve a placebo (an inactive substance). Some people in the research study receive the investigational vaccine or medication, and others receive a placebo.

Being in the registry does not mean that you will be eligible for a research study. It also does not mean that you have to take part in any research study we contact you about.

You do not have to be a Kaiser Permanente member to participate in this registry, but if you are a member, participation will not affect your care or your benefits.

You are free to say no now or to leave the registry at any time later by emailing CHR_KPNWResearch@kpchr.org. Either way, there will be no penalty. Your decision will not affect the health care you receive or benefits that you are entitled to.

While you are in the registry, if you have questions, concerns, or complaints about the registry, please contact us at 503-335-2486 (local) or 877-900-1125 (toll free).

This registry is being overseen by an Institutional Review Board ("IRB"). An IRB is a group of people who perform independent review of research studies. If you have questions about your rights as a research subject, and/or concerns or complaints regarding this registry, contact Kaiser Permanente Northwest IRB at 503-528-3945.

Are there any risks or benefits to joining the registry?

If you join the registry we will keep your personal information in a database that only authorized registry staff can access. There is a small risk that your confidential information could accidentally be seen or accessed by someone who is not on the registry team. The procedures for preventing the unauthorized release of your information are the same as for your medical record.

You will not benefit personally as a result of your participation in this registry.

There will be no costs to you if you choose to take part in this registry.

You will not be paid or given any compensation for taking part in this registry.

What should I do if I am interested in joining the registry?

If want to join the registry and agree to have your information stored as described above, please: 

Complete the survey »