My PACER Study Guide

Which medicines you take for your myositis, when you started them, and if you have stopped any.

To understand your treatment goals, how satisfied you are with your current medications, and track how your treatment changes over time.

1. Look at each medicine name
2. Check if you: "Currently take it", "Took it in the past", or "Never took it".
3. If you take it now, tell us when you started or stopped it approximately. If you don't remember the exact date, mark Jan 1st of the year you started or stopped medication. If you do know the date, but know the month and year, then mark 1st of the month in the year you started or stopped the medication.

How severe your myositis symptoms have been over the past 7 days, including muscle weakness, muscle pain, joint pain, skin rash, cough, fatigue, and difficulty swallowing.

To track which symptoms bother you most and how they change over time.

1. Think about the past 7 days only
2. For each symptom, pick one:

At the end, rate how active your disease has been overall.

Your medical history related to myositis — what types of myositis symptoms you ever developed and when.

To build a complete picture of your myositis to better understand how myositis develops and affects different people.

Report myositis subtypes you have been diagnosed with.

Dermatomyositis (DM), Amyopathic DM, Juvenile DM (JDM), Polymyositis (PM), Immune-Mediated Necrotizing Myopathy (IMNM), Anti-synthetase Syndrome (ASyS), Inclusion Body Myositis (IBM), Overlap Myositis, Clinically Amyopathic DM (CADM), Cancer-associated myositis.

• Family History — History of autoimmune diseases in any first-degree relative
• Social History — History of smoking
• Past Medical Hx — History of cancer diagnosis, history of transplant

1. Answer each question as best you can
2. It is OK to pick Not Sure if you do not remember
3. For dates, your best guess is fine
4. Tell us about any family members with autoimmune diseases

How much difficulty you have with 11 daily activities: standing from a chair, getting up from the floor, using the toilet, walking on flat surfaces, walking outdoors, going up/down stairs, stepping over curbs, swallowing liquids, swallowing solid food, carrying a 5-pound object, and gripping small objects.

Inclusion Body Myositis (IBM) affects specific muscle groups. This tracks how IBM impacts your daily life over time.

1. For each activity, move the slider from 0 to 10:

2. Pick the number that best matches your ability today

How tired you have felt over the past 7 days — including how often you feel tired, run out of energy, or have trouble doing everyday things because of tiredness.

Fatigue is common in myositis and understanding your fatigue helps us develop better ways to treat it.

1. For each question, pick one:

2. At the end, rate your fatigue from 0 (none) to 10 (worst possible)

This helps us see how tiredness affects your work, thinking, and daily activities.

Whether your overall health has gotten better, stayed the same, or gotten worse since you joined the My-PACER registry.

This simple question captures your own view of how your health has changed since you have joined the study.

1. Think about how you felt when you first joined the registry
2. Compare it to how you feel now
3. Pick one answer:

Whether you are working, how many hours you missed from work due to myositis in the past week, and how much myositis affected your ability to do housework, errands, and other daily activities.

Myositis can make it hard to work and do everyday tasks. This helps researchers understand the real-world impact of the disease.

1. Tell us if you currently work for pay
2. If yes: How many hours did you miss due to myositis last week? How many hours did you actually work? Rate from 0–10 how much myositis affected your productivity.
3. Everyone: Rate from 0–10 how much myositis affected daily activities (housework, errands, etc.)

How many times you can stand up from a chair in 30 seconds, and whether you needed to use your hands or any assistive device.

This test measures your leg strength and endurance by recording the total number of times you can stand up completely and sit back down within 30 seconds.

1. Find a sturdy chair preferably with no armrests.
2. Sit in the middle of the chair with your feet flat on the floor and your back straight.
3. If you can rise from a chair even once without using your hands, fold your arms across your chest. If you absolutely need your hands or the armrest to stand up, you may use them.
4. When ready, start the timer (ask a friend to help, or place a timer/smartphone on a table next to you).
5. Rise to a full standing position and then sit back down.
6. Repeat as many times as you can for 30 seconds.
7. When 30 seconds is up, stop. If you have not returned to a seated position, do not count the last effort.
8. Record the number of full repetitions you completed.
9. Complete at least 2 tests. Rest 1–2 minutes between each test if needed.
10. Note if you used your hands or armrest to help.

How well you can perform 10 daily activities: swallowing, handwriting, cutting food, fine motor tasks (like opening doors), dressing, hygiene (bathing), turning in bed, getting up from a chair, walking, and climbing stairs.

This questionnaire was designed specifically for daily functional activities.

1. For each activity, read the choices
2. Pick the one that best describes your ability
3. Choices range from Normal to Unable

How much pain has interfered with your daily activities, housework, social activities, fun activities, and enjoyment of life in the past 7 days.

This helps us understand the full impact of pain on your life.

1. Think about the past 7 days
2. For each question, pick one: Not at all, A little bit, Somewhat, Quite a bit, or Very much
3. At the end, rate your average pain from 0 (no pain) to 10 (worst pain possible)

How much difficulty you have with physical activities like doing chores, opening heavy doors, dressing yourself, washing and drying your body, getting in and out of a car, climbing stairs, and walking more than a mile.

This gives a detailed picture of what daily activities are hard for you and helps track your physical function.

For each activity, pick one:

How your skin rash has affected your life over the past week — including itching or pain, embarrassment, shopping, clothing choices, social activities, sports, work or school, relationships, and how much time you spend on skin treatment.

Dermatomyositis (DM) often causes visible skin rashes, and this helps us understand the impact of skin symptoms.

1. Think about the past week
2. For each question, pick one:

3. Takes about 2 minutes

How bad your itching was at its worst point in the past 24 hours, and how bad it was on average.

Itching from skin rashes can be very bothersome in DM. This helps track it.

1. Think about the past 24 hours
2. Rate your worst itch: 0 = no itch, 10 = worst itch you can imagine
3. Rate your average itch the same way

How active your myositis is right now, on a scale from "No evidence of disease activity" to "Extreme disease activity"

Your myositis is the result of the combined effects of many disease processes. One of these is disease activity, which is active inflammation in your muscles, skin, joints, intestines, heart, lungs or other parts of your body, which can improve when treated with medicines.

Considering all the ways that myositis affects you (active inflammation) move the slider to show how active your myositis (active inflammation) feels today:

The name, specialty, and contact information of the doctor who treats your myositis.

So we can contact your doctor if we need to confirm your diagnosis or get copies of test results (with your permission).

1. Enter your myositis doctor's first and last name
2. Enter their specialty: Rheumatology, Neurology, Dermatology, or Other
3. Enter their office address and phone number