Secondary Progressive MS Research in Phoenix: A Guide to the Monarch Study

Living with secondary progressive multiple sclerosis (SPMS) can raise questions that do not always have quick answers. Symptoms, daily routines, treatment plans, and goals can change over time. For adults in Arizona who are interested in clinical research, a study visit can be a way to learn whether a current research opportunity may be a fit—not a promise of treatment, benefit, or enrollment.

Arizona Neuroscience Research lists the Monarch study (ZB020-03-002) among its current MS research opportunities in Phoenix. Monarch is a Phase 3 clinical trial evaluating orelabrutinib in adults with non-active secondary progressive MS. This guide explains what research screening generally involves, which questions to ask, and how to take the next step with realistic expectations.

What is secondary progressive MS?

Multiple sclerosis is a condition in which the immune system affects the central nervous system, including the brain, spinal cord, and optic nerves. MS looks different from person to person. Some people have relapses—new or worsening neurologic symptoms lasting at least 24 hours—followed by periods of recovery. Others experience a gradual increase in disability or change in function over time.

Secondary progressive MS is a term used when someone with a prior relapsing course develops a more progressive pattern. “Non-active” is a specific study-related term that can depend on recent relapse activity, MRI findings, and protocol definitions. It is not something to self-classify from symptoms alone. A person’s treating clinician and the research team can help explain how the study defines its terms and whether screening could be appropriate.

About the Monarch study in Phoenix

According to the Arizona Neuroscience Research Current Studies page, Monarch is a global, randomized, double-blind, placebo-controlled Phase 3 study of orelabrutinib for adults with non-active SPMS. The study is identified as ZB020-03-002, and the site links to the ClinicalTrials.gov record, NCT07299019. Study details, recruiting status, eligibility, visits, and local availability can change, so use the current registry record and the ANR research team as the final sources of information.

In a randomized study, a computer assigns participants to study groups according to the protocol. “Double-blind” generally means certain people involved in the study do not know which assigned intervention a participant receives during the blinded portion. A placebo-controlled design compares the study intervention with an inactive comparison. These design features help researchers evaluate safety and effectiveness as carefully as possible. They do not mean an individual will receive a specific medicine or experience a specific result.

Why clinical research can matter in SPMS

Clinical trials are how researchers learn whether investigational approaches are safe enough to study and whether they may help a defined group of people. They also generate information that can guide future care and future research. Participation is voluntary. Choosing to ask about a study does not mean changing current care, and choosing not to participate is a valid decision.

For many people, research starts with questions. What is the purpose of the study? What will visits involve? Is there a placebo? Can I remain with my regular neurologist? What costs are covered? What happens if I decide to stop? The answers should come from the approved study materials and informed-consent conversation, not from online assumptions.

What screening usually includes

Screening is the process used to see whether a person may meet a protocol’s eligibility criteria. It is not a guarantee of enrollment. The research team may review medical history, MS history, medications, prior testing, and other records. A screening visit may include a physical or neurologic examination, questions about daily function, laboratory testing, imaging, or other procedures described in the study protocol.

Each criterion exists for a reason: to protect participants, reduce avoidable risks, and help researchers interpret the study data. People can be excellent candidates for care but not meet the specific requirements of one research protocol. If that happens, the team can explain the outcome and may be able to discuss other current options listed by ANR.

Information to have ready

• A current medication and supplement list, including doses when available
• Recent MS history, including relapses, hospitalizations, and changes in function
• Names of treating clinicians and prior neurology records
• Past MRI reports or study records if the research team requests them
• Questions about transportation, visit time, caregiver involvement, and work schedules

Do not stop or change an MS medication because you are considering research. Continue working with your treating clinician unless you receive specific medical guidance from the clinician responsible for your care.

Questions to ask before deciding about a study

A good consent conversation should leave room for questions. You can ask the same question more than once, take the materials home, and discuss them with people you trust. Consider asking:

• What is the study trying to learn?
• How does the protocol define non-active SPMS?
• What are the possible study groups and how are they assigned?
• What visits, tests, laboratory work, or imaging are expected?
• How long could participation last?
• Which travel or study-related costs may be covered, and which are not?
• What side effects, risks, and uncertainties are known at this time?
• Can I continue seeing my regular neurologist?
• Who should I call with a new symptom or a concern between visits?
• What happens to my information if I leave the study?

The informed-consent form is an educational document and a record of your agreement to participate. It should explain the study’s purpose, procedures, risks, potential benefits, alternatives, confidentiality practices, and voluntary nature. Signing it is not a contract to remain in the study; participants can withdraw, although the team should explain any safety follow-up needed when someone stops.

Research participation and routine MS care

Research participation does not replace routine medical care. People with MS may still need regular neurologic follow-up, symptom management, rehabilitation support, primary care, and urgent evaluation when appropriate. Research teams coordinate according to the protocol, but each person should ask how communication with their established care team will work.

It is especially important to have a plan for new or worsening symptoms. New weakness, vision changes, numbness, problems with balance, or major fatigue can have more than one cause. Contact your treating clinician or the study team for non-emergency concerns and follow their instructions. Call 911 for sudden facial droop, one-sided weakness, trouble speaking, new severe confusion, sudden loss of vision, chest pain, fainting, or another possible emergency. Do not wait for a research appointment when symptoms may need immediate care.

Practical planning for Phoenix-area visits

Phoenix-area scheduling can involve heat, traffic, work, caregiving, and transportation concerns. Ask early whether the protocol includes in-person visits, remote check-ins, travel reimbursement, parking information, or timing flexibility. If mobility is affected, ask about accessible parking, building access, and whether a support person can attend. Clear logistics make it easier to decide whether a study fits real life.

Research visits can include detailed assessments. Bring glasses, assistive devices, a medication list, and anything else the team asks for. Arrive hydrated unless the protocol gives different instructions. If you feel unwell before a visit, call the research team rather than assuming you should proceed.

Frequently asked questions

Will I definitely receive the study drug?

No. Monarch is described as randomized and placebo-controlled. The consent form and research team can explain assignment, blinding, and the exact study procedures. Do not assume an assignment until the team explains it.

Does asking about the study mean I am eligible?

No. Interest is the first step. Eligibility is determined through the protocol’s screening process and can depend on many factors, including MS history, current health, medicines, prior treatment, and test results.

Can I join if I have a different type of MS?

Each study uses defined eligibility criteria. Monarch is listed by ANR for adults with non-active SPMS. A research coordinator can clarify the current criteria and discuss whether another listed study may be more relevant.

What if I decide not to participate?

That decision is entirely yours. You can continue discussing your treatment and symptom goals with your own health care team. Research is one option among many, not an obligation.

Understanding uncertainty in research

It is normal to want a simple answer about whether a study will help. Ethical research does not offer that promise. Before a study is completed, researchers are still learning about the intervention, the participant group, and the balance of potential risks and effects. The consent process should describe what is known, what is not known, and why the study is being conducted.

That uncertainty is a reason to read the materials carefully, not a reason to avoid asking. Bring a family member, friend, or caregiver if you would like another set of ears. Ask the coordinator to explain unfamiliar terms in plain language. Take notes. If English is not your preferred language or you need an accommodation, ask what support may be available.

Protecting your role as a participant

Research participants have rights. They can ask questions, receive information about whom to contact, refuse procedures they do not understand, and decide whether participation is right for them. Institutional review boards and other oversight processes are designed to protect participant welfare, but personal questions still matter. A research opportunity should fit both the protocol and your own circumstances.

If an issue comes up during a study, tell the research team promptly. This includes possible side effects, changes in medicines, hospital or urgent-care visits, pregnancy considerations, and a change in your ability to attend visits. Timely information helps the team respond safely and keeps study records accurate.

How families can help

Family members and care partners often coordinate transportation, observe changes in function, or help organize medications and appointments. They can support decision-making without making the decision for someone else. Their questions about the visit schedule, communication, and emergency contacts are appropriate and welcome during the consent discussion.

Keeping a simple record of your questions, appointments, and symptom changes can help you communicate clearly with both your usual care team and the research staff. The record is not a substitute for care. It is simply a practical way to make sure the details that matter to you are available when decisions are being discussed.

Write down contact numbers and ask where to direct questions after normal business hours.

Keep every approved document for future reference.

How to learn more about current MS research

Visit ANR’s Current Studies page to review listed opportunities and the Volunteer Today page to contact the research team. For the most current protocol information, see the Monarch ClinicalTrials.gov record. The ANR team can explain the screening process, answer logistical questions, and tell you whether recruitment is currently open at the Phoenix location.

This article is for education only and is not medical advice, a recommendation to enroll, or a promise of benefit. Clinical research eligibility, study status, and procedures can change. Discuss personal medical decisions with your treating clinician and the qualified research team.