How to Find HS Clinical Trials: Get Involved

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Hidradenitis Suppurativa (HS) is a chronic, painful, and often debilitating inflammatory skin condition that significantly impacts the lives of those affected. While existing treatments offer relief for some, many individuals continue to seek more effective solutions. Clinical trials represent a crucial pathway to new therapies, offering access to cutting-edge treatments before they become widely available, while also contributing to vital medical research. Getting involved can feel daunting, but with a clear understanding of the process, it becomes an empowering step towards better managing your HS and helping others.

This in-depth guide is designed to demystify the process of finding and joining HS clinical trials. We’ll cut through the jargon and provide practical, actionable steps, empowering you to navigate this landscape with confidence.

Understanding HS Clinical Trials: What Are They and Why Participate?

Clinical trials are research studies conducted with human volunteers to evaluate new medical, surgical, or behavioral interventions. For HS, this typically involves testing new drugs, biologics, or medical devices to assess their safety and effectiveness in treating the condition. These trials are meticulously designed and rigorously monitored to ensure participant safety and reliable results.

Why consider participating?

  • Access to Novel Treatments: You may gain access to investigational therapies not yet available to the general public. These could be treatments that target HS in new ways, potentially offering more effective symptom control or even remission.
    • Example: A trial might be testing a novel biologic medication that specifically blocks an inflammatory pathway identified as key in HS pathology, offering a new avenue for treatment when conventional methods have failed.
  • Close Medical Monitoring: Throughout the trial, you’ll receive comprehensive medical care and monitoring from a dedicated team of specialists, often at no cost. This includes regular examinations, lab tests, and assessments of your HS progression and overall health.
    • Example: You’ll have scheduled visits with dermatologists, nurses, and research coordinators who are highly knowledgeable about HS, potentially leading to a more thorough and consistent level of care than you might typically receive.
  • Contribution to Medical Advancement: Your participation directly contributes to the scientific understanding of HS and the development of new treatments for the broader HS community. You become an active part of finding solutions that can improve the lives of countless individuals.
    • Example: By tracking your symptoms and response to a study drug, you provide valuable data that helps researchers determine if the treatment is safe and effective, ultimately paving the way for its potential FDA approval and wider use.
  • Financial Compensation: Many trials offer compensation for your time, travel expenses, and other study-related costs. This can help offset any burdens associated with participation.
    • Example: You might receive a stipend for each clinic visit, or reimbursement for mileage, parking, and childcare, making participation more feasible.

While the potential benefits are significant, it’s crucial to approach clinical trials with a clear understanding of what’s involved.

Strategic Search: Finding Relevant HS Clinical Trials

Finding suitable HS clinical trials requires a strategic approach. Don’t just rely on a single source; cast a wide net to identify all potential opportunities.

1. Leverage Online Clinical Trial Databases

These databases are the most comprehensive resources for discovering ongoing clinical trials globally.

  • ClinicalTrials.gov (United States National Library of Medicine): This is the gold standard for clinical trial information. It’s a public database that lists privately and publicly funded clinical studies conducted around the world.
    • Actionable Steps:
      • Navigate to ClinicalTrials.gov.

      • In the “Condition or disease” field, type “Hidradenitis Suppurativa.”

      • You can refine your search by “Country,” “State,” “City,” “Recruitment Status” (e.g., “Recruiting,” “Not yet recruiting,” “Active, not recruiting,” “Completed”), “Study Type” (e.g., “Interventional,” “Observational”), and “Phase” (e.g., Phase 1, 2, 3, 4).

      • Concrete Example: Search “Hidradenitis Suppurativa” and filter by “Recruiting” and your specific state (e.g., “California”) to see actively enrolling trials near you. Review the detailed study descriptions for eligibility criteria, locations, and contact information.

  • EU Clinical Trials Register (European Union): Similar to ClinicalTrials.gov, this registry provides information on clinical trials conducted within the European Union.

    • Actionable Steps:
      • Visit the EU Clinical Trials Register website.

      • Use the search function and enter “Hidradenitis Suppurativa.”

      • Utilize advanced search filters for country, age group, gender, trial phase, and status to narrow down results relevant to your situation.

      • Concrete Example: If you reside in Germany, search “Hidradenitis Suppurativa” and select “Germany” as the country to find trials specifically recruiting in that region.

2. Connect with HS Specialty Clinics and Research Centers

Many academic medical centers and large hospital systems have dedicated Hidradenitis Suppurativa clinics or dermatology research departments that conduct their own clinical trials.

  • Actionable Steps:
    • Search online for “Hidradenitis Suppurativa clinic [your city/region]” or “dermatology research [your university/hospital name].”

    • Once you identify a relevant center, explore their website for a “Clinical Trials” or “Research” section. They often list ongoing studies and contact information for their research coordinators.

    • Concrete Example: If you live near a major university hospital, visit their dermatology department’s website. Look for a link like “Participate in Research” or “Clinical Studies” to find a list of HS trials. You might find a direct email or phone number for the study team to inquire about eligibility.

3. Engage with Patient Advocacy Organizations and Support Groups

Organizations dedicated to HS often maintain lists of clinical trials or can direct you to resources.

  • Actionable Steps:
    • Visit the websites of prominent HS patient advocacy groups (e.g., Hidradenitis Suppurativa Foundation, HS Connect, Hope for HS).

    • Look for sections on “Clinical Trials,” “Research,” or “Get Involved.” These organizations frequently collaborate with researchers and may have up-to-date information on recruiting studies.

    • Join online or in-person HS support groups. Members often share information about trials they’ve participated in or heard about.

    • Concrete Example: On the HS Foundation’s website, navigate to their “Clinical Trials” page. They might have a user-friendly search tool or a curated list of active trials, often with direct links to the study details on ClinicalTrials.gov.

4. Consult Your Healthcare Provider

Your dermatologist or healthcare team is a valuable resource for identifying clinical trials.

  • Actionable Steps:
    • During your next appointment, express your interest in participating in an HS clinical trial.

    • Ask your doctor if they are aware of any ongoing trials in your area or if they can refer you to a research center.

    • They may also be able to assess your general suitability for a trial based on your medical history and current HS severity.

    • Concrete Example: Tell your dermatologist, “I’m interested in exploring clinical trials for my HS. Are there any studies that you think might be a good fit for me, or can you recommend any research centers?”

5. Utilize Clinical Trial Matching Services

Several online platforms offer services to match you with suitable clinical trials based on your medical profile.

  • Actionable Steps:
    • Search for “clinical trial matching service HS.”

    • These platforms typically ask you to complete a questionnaire about your condition, medical history, and location. They then provide a list of potentially matching trials.

    • Concrete Example: Sign up for a service like TrialSearch. Input your HS diagnosis, severity, previous treatments, and location. The platform will then send you email alerts or display a dashboard of trials that meet your criteria.

Navigating Eligibility and the Screening Process

Once you’ve identified potential trials, the next critical step is understanding and navigating the eligibility and screening process. Every clinical trial has specific inclusion and exclusion criteria.

1. Understand Inclusion and Exclusion Criteria

These are the strict requirements that determine who can and cannot participate in a study. They are designed to ensure participant safety and the integrity of the research data.

  • Inclusion Criteria (Who Can Join): These are characteristics a potential participant must possess.
    • Concrete Examples:
      • “Must be diagnosed with moderate to severe Hidradenitis Suppurativa.” (This often refers to a specific Hurley stage or number of inflammatory lesions).

      • “Age 18 to 75 years old.”

      • “Have active HS lesions in at least two distinct anatomical areas (e.g., axilla and groin).”

      • “Have failed to respond adequately to at least one conventional therapy (e.g., oral antibiotics) for a specified duration.”

      • “Be willing to follow the study protocol and attend all scheduled visits.”

  • Exclusion Criteria (Who Cannot Join): These are characteristics that would prevent someone from participating.

    • Concrete Examples:
      • “Pregnant or breastfeeding women, or women of childbearing potential unwilling to use highly effective contraception.”

      • “History of certain co-existing medical conditions (e.g., uncontrolled diabetes, severe cardiovascular disease, certain cancers).”

      • “Current use of specific medications that might interfere with the study drug.”

      • “Active infections or a history of severe infections within a certain timeframe.”

      • “Previous participation in another investigational drug trial within a specified period.”

      • “Any other condition that, in the opinion of the investigator, would make participation unsafe or interfere with the study results.”

2. Initial Inquiry and Pre-Screening

After reviewing the trial details, contact the research site to express your interest.

  • Actionable Steps:
    • Use the provided contact information (phone number or email) to reach out to the study coordinator.

    • Clearly state your interest in the HS clinical trial.

    • The study coordinator will typically conduct a brief pre-screening over the phone or via an online questionnaire. This involves asking a few basic questions to see if you meet the most obvious inclusion/exclusion criteria.

    • Concrete Example: Call the research site and say, “Hello, I saw your clinical trial for Hidradenitis Suppurativa listed on ClinicalTrials.gov and I’m interested in learning more about participation. My name is [Your Name], and I have moderate HS. Can you tell me if I might be eligible?” They might then ask about your age, diagnosis date, and current medications.

3. The Informed Consent Process

If you pass the pre-screening, you’ll be invited for an in-person or virtual informed consent discussion. This is a critical step where you receive comprehensive information about the trial.

  • What Informed Consent Entails:
    • Detailed Explanation: The research team will explain the study’s purpose, duration, procedures, potential risks, benefits, alternatives, and your rights as a participant.

    • In-Depth Document: You’ll be provided with a written “Informed Consent Form” (ICF). This document is typically long and detailed, covering every aspect of the study.

    • Opportunity to Ask Questions: This is your chance to ask all your questions. Don’t hesitate to ask for clarification on anything you don’t understand. Bring a list of questions with you.

    • Voluntary Participation: You are never obligated to participate. You can withdraw at any time, for any reason, without penalty or impact on your current or future medical care.

    • Concrete Example: During the informed consent meeting, the study coordinator will walk you through a 20-page document explaining the study drug’s known side effects, the number of visits, what tests will be performed, the possibility of receiving a placebo, and your right to withdraw. You might ask, “What happens if I experience a severe flare during the study? Will I still receive my standard care?”

4. The Screening Visit

If you decide to proceed after informed consent, you’ll undergo a formal screening visit. This involves a thorough medical evaluation to confirm your eligibility.

  • Actionable Steps:
    • Medical History Review: The research team will take a detailed medical history, including your HS progression, past treatments, and any co-existing conditions.

    • Physical Examination: A physical exam will be conducted, often specifically focusing on your HS lesions and severity.

    • Laboratory Tests: Blood tests, urine tests, and other diagnostic tests (e.g., ECG, imaging) will be performed to assess your overall health and rule out any conditions that would exclude you.

    • HS-Specific Assessments: This may include specific HS severity scoring (e.g., Hurley stage, Hidradenitis Suppurativa Physician Global Assessment (HS-PGA), or lesion counts).

    • Concrete Example: At the screening visit, a study doctor might meticulously examine all your HS-affected areas, take photographs, measure lesion sizes, and perform a blood draw to check your liver and kidney function, as well as screen for certain infections like HIV or hepatitis.

Preparing for Participation and What to Expect

Once you’ve successfully completed the screening process and are enrolled, prepare for the trial experience. Being organized and proactive will enhance your participation.

1. Understand the Study Protocol

The study protocol is the detailed plan for the clinical trial. While you won’t get the full scientific document, the informed consent form will summarize key elements.

  • Key Information to Note:
    • Treatment Schedule: How often will you receive the investigational drug? What is the route of administration (e.g., oral, injection, infusion)?

    • Visit Schedule: How many visits are required, and how frequently? What is the expected duration of each visit?

    • Procedures at Each Visit: What tests, examinations, and questionnaires will be conducted at each appointment?

    • Duration of Participation: How long is the entire trial expected to last for you?

    • Placebo Group: Understand if there’s a possibility of being assigned to a placebo group and what that entails.

    • Concrete Example: The protocol might specify that you’ll receive a subcutaneous injection every two weeks for 24 weeks, with clinic visits scheduled at weeks 2, 4, 8, 12, 16, 20, and 24. Each visit might involve a physical exam, blood draw, and completion of a pain questionnaire.

2. Maintain Open Communication

Your relationship with the research team is crucial.

  • Actionable Steps:
    • Report All Changes: Immediately report any new symptoms, side effects, changes in your health, or new medications to the study team. Even seemingly minor issues can be significant.

    • Ask Questions: Continue to ask questions throughout the trial. If you’re unsure about anything, seek clarification.

    • Keep a Log: Maintain a personal log of your symptoms, any side effects, and medications you take. This can be invaluable for accurate reporting to the study team.

    • Concrete Example: If you develop a new rash or unusual fatigue, contact the study coordinator immediately. They will advise you on whether it’s related to the study drug and if you need to come in for an unscheduled visit.

3. Adhere to the Study Protocol (Compliance)

Following the study protocol precisely is essential for the trial’s success and your safety.

  • Actionable Steps:
    • Take study medication exactly as prescribed (dose, frequency, timing).

    • Attend all scheduled appointments on time.

    • Complete all required questionnaires and diaries accurately.

    • Avoid any prohibited activities or medications as outlined in the informed consent.

    • Concrete Example: If the study drug needs to be taken with food, ensure you consistently do so. If you miss a dose or an appointment, inform the study team immediately so they can provide guidance.

4. Managing Potential Risks and Side Effects

All clinical trials carry some level of risk, even for approved drugs. The research team will monitor you closely, but it’s important to be aware.

  • Types of Risks:
    • Side Effects: The investigational drug may cause new or unexpected side effects, ranging from mild to severe.

    • Ineffectiveness: The investigational treatment may not be effective for your HS, or it may be less effective than your current treatment.

    • Placebo Effect: If the trial is placebo-controlled, you may receive a placebo and your condition might not improve, or could even worsen.

    • Inconvenience: The time commitment, frequent visits, and procedures can be inconvenient.

    • Concrete Example: The informed consent might list potential side effects like nausea, headaches, or injection site reactions. In rare cases, more serious side effects could occur, and the study team will have protocols in place to manage these.

5. Post-Trial Care and Follow-up

Understand what happens once the trial concludes.

  • Actionable Steps:
    • Inquire about post-trial access to the investigational drug if it proves beneficial for you. Some sponsors offer “open-label extensions” where all participants receive the active drug.

    • Discuss ongoing care with your regular healthcare provider, who will resume your treatment.

    • Ask if you will be informed of the study’s overall results.

    • Concrete Example: At the end of a 6-month trial, if the drug is showing promise, the study team might offer you the opportunity to continue receiving the drug in a separate “extension study” for a longer period.

Maximizing Your Clinical Trial Experience

Beyond the practical steps, there are ways to make your participation more valuable for both you and the research community.

1. Document Your HS Journey

A detailed personal record of your HS symptoms, treatments, and their effectiveness can be incredibly helpful.

  • Actionable Steps:
    • Maintain a journal or use a dedicated app to track your HS flares, pain levels (on a scale of 0-10), drainage, number of lesions, and impact on daily activities.

    • Note any triggers you identify.

    • Keep a record of all medications you’ve tried, including dosages and duration of use, and your perceived response to them.

    • Concrete Example: Before starting a trial, create a spreadsheet documenting your HS severity for the past six months, including how many active lesions you have, your average pain score, and any current medications you’re taking. This provides a baseline for comparison.

2. Prepare Questions for Each Visit

Having a list of questions ready ensures you get all the information you need and address any concerns.

  • Actionable Steps:
    • Before each clinic visit, jot down any questions that have arisen since your last appointment.

    • Consider questions about your progress, any new symptoms, or general queries about the study.

    • Concrete Example: For your first follow-up visit, you might ask: “Have my lesion counts decreased?” “Is this rash I’m experiencing a common side effect of the study drug?” “What are the next steps in the trial?”

3. Bring a Support Person

Having a trusted friend or family member accompany you to important visits can be beneficial.

  • Actionable Steps:
    • They can help listen, take notes, and remember details.

    • They can also help you formulate questions or provide emotional support.

    • Concrete Example: During the informed consent discussion, your spouse can help you process the extensive information and ensure all your concerns are voiced.

4. Understand Your Rights as a Participant

Knowing your rights empowers you throughout the process.

  • Key Rights:
    • Right to Informed Consent: You have the right to fully understand the study before agreeing to participate.

    • Right to Withdraw: You can leave the study at any time, for any reason, without penalty.

    • Right to Safety: Your safety and well-being are paramount, and the research team is obligated to monitor you closely.

    • Right to Privacy: Your personal health information will be kept confidential.

    • Right to Information: You have the right to receive new information about the study that might affect your willingness to continue.

    • Concrete Example: If you feel unwell or decide the time commitment is too much, you can inform the study coordinator that you wish to withdraw, and they must respect that decision without question.

Conclusion: Empowering Your HS Journey

Participating in a Hidradenitis Suppurativa clinical trial is a deeply personal decision, one that offers both potential benefits for your own health and a profound opportunity to contribute to the advancement of medical science. By meticulously searching for relevant trials, diligently navigating the eligibility and informed consent processes, and actively engaging with the research team, you can take control of your HS journey in a unique and impactful way. This guide provides the practical framework to empower you at every step, transforming the often-complex world of clinical research into an accessible path toward new hope and improved outcomes for yourself and the global HS community.