Our Participant Resources are designed to provide clear, accessible information and resources to help answer any questions you may have about the study.
If you have any additional questions, contact the CARE for Lyme study team.
Participation Timeline
Note: Italics indicate information only relevant for individuals providing samples.
| Timeline | Details |
| Day 0 | Participant will give consent for Survey Collection to take part in the study. They will also give consent for Sample Collection. |
| Day 1 | The CARE for Lyme team will begin sending materials. Surveys will be available in REDCap and a collection kit will be mailed. |
| Day 3–4 (Approx.) | Kit should arrive at participants' home around this time. Next 7 days - Participant will have one week to:
It’s important to finish everything within this 7-day window at the first timepoint. |
| Day 8–11 (Approx.) | All materials should be completed. Surveys are due, and sample kits should be returned to the CARE for Lyme team at Fred Hutch. |
| Ongoing Follow-Up | Participants will receive follow-up surveys every 3 months. At month 6 (timepoint 3), we’ll send another sample kit. |
Survey Collection Resources
Survey Information
| Survey | Description |
| General | To collect data on a participant’s lifestyle, background (like age, location, income) and patient priorities. Required at initial timepoint. |
| Tick exposure and Lyme | To collect details about a participants' most recent tick bite and any experiences they may have had with Lyme disease diagnosis and treatment. Required at initial timepoint. |
| Medical history | To collect a detailed overview of a participant's past medical history and family medical history. Required at initial timepoint. |
| Symptoms | Comprised of surveys designed to track symptoms related to Lyme disease. Including but not limited to severity of pain and fatigue, joint mobility and neurocognition. Required at all timepoints. |
| General follow-up | A condensed version of the first 3 surveys, to gather updates of the most relevant follow-up information over time. Required at follow-up timepoints. |
| Survey collection feedback | To collect feedback on the survey collection process from participant. Optional at all timepoints but required at final timepoint. |
| Additional Sample Collection Surveys, if applicable | |
| Sample collection and feedback | To collect details and feedback about the participant’ sample collection process. Required with Sample Kit at initial timepoint and month 6 follow-up. |
| Follow-up kit details | To gather updates on participants' consent and kit components. Optional before month 6 follow-up. |
Sample Collection Resources
What's in the Kit
| Collection Device | Description | Sample Collected |
| Self-Lollisponge | A small sponge that you chew on. | Saliva |
| Buccal swab | A cotton-tipped swab used to gently swab the inside of your cheek. | Cheek cells and saliva |
| Orasure | A pad used to brush your teeth and hold in the mouth for a short time. | Mouth cells and microorganisms |
| Vaginal swab | A cotton-tipped swab used to gently swab the vaginal canal. | Vaginal cells and microorganisms |
| Rectal swab | A cotton-tipped swab used to gently swab the rectum. | Fecal cells |
| Skin swab | A cotton-tipped swab used to gently swab different parts of the body. | Skin cells and microorganisms |
| Tasso+ device | Tasso devices contain tiny microneedles to gently puncture the skin's surface. | Blood |
At-Home Sample Collection Instructions
Review our At-Home Sample Collection Instructions (PDF).
Additional Instruction Videos
- Vaginal swab - Vaginal swab video
- Self-Lollisponge - Self-Lollisponge video
- Tasso+ device - Tasso video