Participant FAQs

Answers to your top questions about COLS

We’re glad you want to learn more about COLS!

Below are answers to the most frequently asked questions about COLS including what the project is all about, eligibility and expectations if you choose to participate, and how we protect your privacy.

If we haven’t answered your question yet, please contact us and we’ll do our best to answer your questions.

About COLS

COLS is the world’s first research repository combining biological samples with lifestyle insights–like habits, environmental factors, and behaviors–for 10+ years. This data will provide researchers with the information they need to discover more complete answers to our biggest health questions. That means better treatments, new cures, and a healthier future for people in Colorado and around the globe.

As many diseases as possible will be studied using the COLS repository! COLS is collecting data prospectively so that all diseases that show up in the population over the course of the study can be researched. We are already collaborating with researchers interested in cardiovascular health, differential menopause trajectories, cancer outcomes, pet ownership and social isolation, and frailty. We hope to collaborate with a wide variety of health researchers in the years to come.

The initial phase of COLS will include 500 participants aged 35 and older from Fort Collins. In the next phase, we plan to recruit 5,000 participants from the Fort Collins and Metro Denver areas. In time, we hope to recruit hundreds of thousands of participants from across Colorado.

When conducting research, it is important to remove as many variable factors as possible. By collecting data on Colorado residents only, some of these variable factors are eliminated. Yet, due to Colorado’s diversity, COLS is still able to collect data from a population that is diverse in the factors that need to be studied, such as:

  • Urban vs. rural
  • Age brackets
  • Gender
  • Socioeconomic factors
  • Social determinants of health (housing, environment, education, nutrition, economic stability, community support, etc)

In addition, a high concentration of participants is needed in order to study health at a neighborhood level. This is important because of public health research interests in determining how sociological factors, such as housing, impact health. Collecting adequate data at the neighborhood level will allow researchers to study these factors across neighborhoods while still protecting the privacy of participants.

The population of aging Americans is growing at an unprecedented rate as average lifespan has increased dramatically in the last century. Unfortunately, improved healthspan has not kept pace with the lengthening of lifespan, and many older people suffer from multiple morbidities. For our aging population to benefit from a longer healthspan—and for society to benefit from sustainable population growth—it’s critical to understand the complex interactions between biological factors and social determinants of health, lifestyle, and behavior that underpin successful aging. Focusing on middle-age and older adults will provide insights that enhance healthspan for generations to come.

Lifespan is the length of someone’s life. Healthspan is the duration of a person’s life in which they are in generally good health. Increased lifespan doesn’t always translate into better healthspan. The aim of COLS is to pinpoint factors that impact both healthspan and lifespan, adding life to living.

At this time, COLS is not providing monetary compensation for participation. However, we may provide incentives or giveaways in the future.  People who participate do so out of a desire to help improve health for future generations.

Participants will benefit because we will give you data about how your answers to survey questions compared to the aggregate answers we receive and to national averages. We will create a dashboard in the participant portal where participants can see your own health trends over time. Additionally, if a participant expresses an immediate need on a survey, such as food insecurity or a potential mental health crisis, there will be an automatically generated response that provides a list of resources in your community that may be able to help.

Participating in COLS - Eligibility

Anyone who lives in Colorado and is 35 years or older is eligible to become a COLS participant.  It doesn’t matter if you have a pre-existing condition or not. One of the biggest advantages of COLS is that we will be tracking all types of people without any qualifications. This will help us build the world’s most comprehensive biobank that will include biological samples and sociological data from participants before and after they develop health issues.

Each year, COLS will continue to add participants to eventually track hundreds of thousands of Coloradans across every age group from infants to seniors.

We are beginning to enroll participants age 35 and older in Fort Collins in the Spring of 2022, with plans to enroll additional participants from other parts of the state later in 2022. If you are interested in becoming a participant, please sign up for our newsletter and we will keep you posted on our progress and let you know how to enroll.

Here’s how you get started: 

  • Create an account on our COLS participant portal 
  • Sign the consent form
  • Schedule an appointment at the Columbine Health Systems Center on Healthy Aging at Colorado State University (located in the CSU Health and Medical Center)
    • Attend your appointment and provide a blood sample as well as physical measurements (such as height, weight, blood pressure, and grip strength) 
  • Complete the baseline survey including personal and family health history

We don’t anticipate asking for more than 2-3 hours of your time annually. In addition to providing an annual blood sample (and potentially other samples like urine in future years), we’ll send you short surveys to fill out throughout the year. These surveys will give us insights into your lifestyle, behaviors, work, family, and so forth.

You can make a difference for just a few hours of your time a year. Gain joy knowing that you are participating in a project that will improve health for future generations. Celebrate that you are contributing to the advancement of scientific knowledge that may help prevent or cure a disease that impacts your family.  

No. We do not ask for your social security number or about citizenship status.

Your participation is entirely voluntary. You may leave the study at any time. 

Yes! We’re happy to schedule your appointment via phone at 970-495-2528. Then, at your appointment, we’ll walk you through the consent form and survey questions.

 

 

Participating in COLS - Activities

Right now, COLS’ first and only engagement site is located at Columbine Health Systems Center on Healthy Aging at the Colorado State University campus in Fort Collins, Colorado (located in the CSU Health and Medical Center). We plan to open additional engagement sites in the coming months.

All samples will be taken by Study Coordinators, who are trained phlebotomists. No more than 3 skin punctures will be made in any single attempt to draw blood. The Engagement Site will have snacks and drinks available for participants, and you will be encouraged to wait for at least 15 minutes after your blood collection in case you become faint or dizzy.

Taking part in COLS involves minimal risk. That means that it will not be riskier than what you could expect in your daily life if you shop online, use online banking, or if you go to the doctors and have blood drawn. You should still weigh the risks and benefits before you agree to participate. 

Blood collection

Taking blood may cause some pain, bleeding or bruising at the spot where the needle enters your body. Rarely, taking blood may cause fainting or infection.

Privacy and confidentiality

There is a risk to your privacy in the event of a data breach. A data breach is when someone sees or uses data without permission. If there is a data breach, someone could see or use the data we have about you. We take great care to protect your information so the risk of this is low but it is not zero. We care deeply about your privacy and take great care to protect it. If there is a data breach, we will tell you in a timely manner. Read more about COLS’ commitment to privacy and confidentiality here

Unknown risks

There may be risks that we don’t know about yet. We will tell you if you if we have learned anything that might change your decision to take part.

COLS is not medical treatment. It is a research project. You will not get direct medical benefit by participating in COLS. However, you may find other value in participating. For example, it may bring you joy to know that you are participating in a project that will improve health for future generations, or satisfaction that you are contributing to the advancement of scientific knowledge that may help prevent or cure a disease that impacts your family.

You will be able to view the Physical Measures and results of blood work from your in-person visit by logging into your account on the COLS web portal. These are not clinical laboratory results, but you may find them interesting. 

There may also be opportunities for you to participate in clinical trials and studies related to specific conditions depending on future collaborations between COLS and other research groups. 

At your in-person visit, you will meet with a Study Coordinator who will collect a handful of physical measures from you such as height, weight, blood pressure, and your grip strength. All these measures are non-invasive. The Study Coordinator will explain each measurement to you and you can decline to do any that you choose.

Next, the Study Coordinator, who is a trained phlebotomist, will draw your blood. The amount of blood may change slightly from year to year, but we expect to draw about 50 mL, which will be processed and stored for future use by researchers.

Your visit will take between 30 minutes to an hour. You may leave after giving your blood donation or you can rest in our sitting area. Study Coordinators will be available to assist you and answer any questions.

While information gathered through participation may be helpful for you to share with your healthcare provider, COLS will in no way be involved in your medical care.

COLS will keep you updated about our study via the participant portal and via your communications preferences that you’ll choose when signing up. We will also contact you throughout the year to complete surveys. And we will remind you about scheduling your annual appointment. You can change your communication preferences at any time via the participant portal.

No. Researchers will work directly with COLS staff. Participants will only be communicated with through COLS staff. You get to determine how frequently or infrequently you would like to be contacted by COLS and by which manner (email, phone, etc.).

Personal Data & Privacy

Participants will be asked to donate a blood sample annually by scheduling an appointment and coming to one of COLS Engagement Sites. (Our first Engagement Site will be in Fort Collins; we plan to open additional sites in the future.) Participants also will be asked to fill out questionnaires quarterly. These questionnaires will be administered electronically in mobile-friendly formats. For participants who are uncomfortable with the digital format, you will be able to complete the questionnaires by phone or in person at an Engagement Site.

COLS has built a state-of-the-art data platform to securely collect and store participant data.

Learn more about how we will protect participants’ privacy here.

 

 

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