• 5
  • 8 Top Patient Advocacy Groups For Common Diseases

8 Top Patient Advocacy Groups For Common Diseases

i 3 Table of Contents

Clinical trials serve as the driving force behind medical advancements and improved healthcare. These research studies are designed to test the safety and effectiveness of new treatments, interventions, or diagnostic tools. By participating in clinical trials, volunteers like you play a vital role in moving medical science forward, helping develop new therapies, and potentially benefiting from the latest treatments.

Get Searching! Find Studies That Match Your Needs

Finding a clinical trial that’s right for you is easier than you might think.

Here are some ways to start your search

  1. Search for clinical trials online: Friendly websites like ClinicalTrials.gov in the United States and the World Health Organization’s International Clinical Trials Registry Platform offer comprehensive databases of ongoing clinical trials worldwide, making it simple to find trials that interest you.
  2. Explore government websites: Many countries have national registries for clinical trials, such as the EU Clinical Trials Register and Australia’s Australian New Zealand Clinical Trials Registry. These sites provide reliable information on available studies. For Canada, you can visit the Canadian Cancer Trials website, and for the United Kingdom, explore the UK Clinical Trials Gateway.
  3. Chat with your doctor: Your health care provider is an excellent source of information and can help you identify clinical trials that suit your specific condition or situation. Make sure to ask for their recommendations during your next appointment. Many trials want health volunteers as well, and it may be a way of obtaining additional medical care economically.
  4. Connect with patient advocacy groups: These organizations often have information about clinical trials related to their area of focus, and they can link you with the resources you need.

Top Patient Advocacy Groups For Common Diseases

Here are some patient advocacy groups for common diseases that offer information on clinical trials

American Cancer Society

The American Cancer Society provides comprehensive resources on cancer clinical trials, including a clinical study matching service, a guide to understanding clinical trials, and FAQs about participating in cancer research studies.

Alzheimer’s Association

The Alzheimer’s Association offers information on Alzheimer’s disease clinical trials, as well as a trial match service that helps you find relevant studies based on your personal criteria.

American Heart Association

The American Heart Association provides information on cardiovascular disease and stroke clinical trials, including details on how to get involved and the benefits of participating.

National Multiple Sclerosis Society

This organization offers resources on multiple sclerosis clinical trials, including a guide to understanding the clinical trial process and a search tool for finding trials relevant to your situation.

American Diabetes Association

The American Diabetes Association provides information on diabetes clinical trials, including an overview of the clinical study process and a research study search tool.

Parkinson’s Foundation

The Parkinson’s Foundation offers resources on Parkinson’s disease clinical trials, including a guide to understanding clinical trials, a trial finder tool, and information on how to get involved.

Crohn’s & Colitis Foundation

This organization provides information on clinical trials for Crohn’s disease and ulcerative colitis, including a clinical trial finder tool and an overview of the clinical trial process.

National Psoriasis Foundation

The National Psoriasis Foundation offers resources on psoriasis and psoriatic arthritis clinical trials, including a search tool for finding relevant trials and a guide to understanding the clinical trial process.

Additionally, the Center for Information and Study on Clinical Research Participation provides general guidance and support for those interested in clinical trials, including educational resources, search tools, and information on upcoming clinical research events.

Evaluating Clinical Trials: Take Your Time: Carefully Evaluate Each Option

Before joining a clinical trial, it’s essential to consider a few key aspects

  1. Understand the trial’s purpose: Familiarize yourself with the goals of the study, such as whether it aims to test the effectiveness of a new drug, evaluate a medical device, or explore a new diagnostic method. Consider how participating in the trial might benefit you personally, as well as the potential broader impact on future patients and medical science as a whole.
  2. Check the eligibility criteria: Clinical trials have specific requirements for participant age, gender, medical history, and current health status. These criteria help ensure the safety of participants and the validity of the study’s results. Carefully review the eligibility criteria for the trial you’re considering and confirm that you meet these requirements. If you’re unsure, consult with your healthcare provider or the trial coordinator for clarification.
  3. Weigh the risks and benefits: Participating in a clinical trial can offer several advantages, such as access to new treatments before they’re widely available, close monitoring by medical professionals, and the opportunity to contribute to medical research. However, there may also be potential risks or side effects, including unforeseen complications, adverse reactions, or disappointing results. Discuss the potential risks and benefits with your healthcare provider and the trial coordinator to make an informed decision about whether to participate. Travel costs, hospital stays and a wide range of compensation are often provided by the study sponsor.
  4. Know the trial’s timeline and commitment: Clinical trials vary in length, from a few weeks to several years, depending on the study’s objectives and design. It’s essential to have a clear understanding of the trial’s duration, the frequency of visits or treatments, and the overall time commitment required from you. This information can help you determine if the trial fits your schedule and if you’re prepared to commit to the entire process. Also, consider any potential travel requirements, as some trials may involve visits to specialized research centers or multiple locations.

Joining a Clinical Trial: Be Informed!

If you decide to participate in a clinical trial, here’s what to do next

  1. Reach out to the trial coordinator: Get in touch with the designated person for the study, usually listed on the trial’s website or informational materials, to express your interest and ask any questions you might have. The trial coordinator can provide valuable insights and help you better understand the study, the clinical trial team, their objectives, and your potential role as a participant.
  2. Provide informed consent: Before joining, you’ll need to review and sign an informed consent form detailing the study’s purpose, procedures, risks, and benefits. This crucial document ensures that you fully understand what you’re agreeing to and protects your rights as a participant. Take your time to read through the document carefully and don’t hesitate to ask questions or seek clarification from the trial coordinator or your healthcare provider.
  3. Get screened for eligibility: The study team will perform a thorough screening process to ensure you meet the study’s eligibility criteria. This may involve reviewing your medical records, conducting a physical exam, or performing specific blood tests or assessments. Be prepared to share detailed information about your medical history, treatment history, and current health status to help the team determine if you’re a suitable candidate for the trial. Exclusion criteria can vary, including family history, and it is often difficult for pharmaceutical companies to fill patient panels.
  4. Familiarize yourself with the trial protocol: Once you’re deemed eligible, take the time to learn about the study’s design, procedures, and requirements. This may include information about the medications or treatments being tested, the schedule of tests and follow-up visits, and any lifestyle changes or restrictions you may need to adhere to during the trial. Understanding the trial protocol will help you feel more confident and prepared as you embark on this exciting journey of contributing to medical research.

Participating in a Clinical Trial: Tips for Success

Once you’ve joined a clinical trial, keep these tips in mind to help you navigate the process and make the most of your experience

  1. Understand the trial process: Familiarize yourself with the study’s phases, such as initial safety testing, dosing and efficacy evaluation, or long-term follow-up. Learn what to expect during each phase, including the types of tests, procedures, and assessments you may undergo. By understanding the clinical trial process and phases, you’ll be better prepared for any challenges or surprises that may arise.
  2. Monitor your symptoms and side effects: Keep a detailed record of any changes in your health or well-being, as well as any side effects you experience during the trial. This information can help the trial team assess the treatment’s safety and effectiveness, and it can also provide valuable insights for your healthcare provider. Consider using a journal or smartphone app to help you track your symptoms and side effects consistently and accurately.
  3. Stay in touch with the trial team: Maintain open lines of communication with the study’s researchers, healthcare professionals, and the trial coordinator. Feel free to ask questions, seek clarification, and share any concerns or feedback about your experience. Regular communication can help ensure your safety and well-being, as well as enhance the overall success of the trial.
  4. Know your rights as a participant: As a clinical trial participant, you have several rights, including the right to withdraw from the study at any time without penalty or loss of benefits. Additionally, your privacy and confidentiality are protected under applicable laws and regulations. Make sure you understand these rights and feel comfortable discussing them with the trial team or your health care team if necessary. You may need to also speak to your insurance company before embarking on this journey.

By following these tips, you’ll be better equipped to succeed in your clinical trial journey, contributing to valuable medical research and potentially benefiting from cutting-edge treatments.

Conclusion: The Impact of Clinical Trials and Your Role

In conclusion, clinical trials are crucial for advancing medical knowledge and improving healthcare outcomes. By participating in clinical trials, you can make a difference in the development of new treatments and potentially benefit from innovative promising therapies. To find the perfect clinical trial, consult government websites, have a conversation with your doctor, or get in touch with patient advocacy groups. Before joining, ensure you understand the study’s purpose, eligibility criteria, risks and benefits, and the required commitment. During the trial, maintain open communication with the trial team, track your symptoms and side effects, and stay informed about your rights as a participant. For additional resources and support, consider reaching out to organizations like the National Institutes of Health, National Cancer Institute or the Center for Information and Study on Clinical Research Participation. By participating in clinical trials, you become an active partner in shaping the future of healthcare.