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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
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  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Clinical Trial Opportunities for Patients and Caregivers

Clinical research is the study of health and illness in people. Scientists may have many reasons for doing a clinical study, such as:

  • To explore the cause of a disease or a set of symptoms
  • To test if a treatment will help with a symptom or condition
  • To learn how a certain behavior affects people’s health

We currently have a number of clinical research studies open for patients and caregivers. Links to the clinical trials we are working to fill immediately are listed below.

If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com.

If you are NOT currently a member and are looking for study volunteer opportunities, please complete this sign-up process and include all medical conditions to be considered for one or more of the clinical trials listed below and any other similar research studies.

Feel free to also share this page with friends or family who may be interested.

United States:

COVID-19 Study Now Enrolling family caregivers of Teens 12‒17 United States
We need your help as we work to research an investigational COVID-19 variant vaccine.

Let’s advance Diabetic Macular Edema research together United States
Clinical trial looking for diabetes participants who are 18+ years of age and living in Texas, South Carolina, Georgia, Arizona, New York, Florida, California & Minnesota.

Alzheimers patients United States
Living with Alzheimer’s disease? Consider enrolling in a clinical trial today.

Lower Limb Spasticity due to Stroke or Traumatic Brain injury patients living in Columbia (Missouri), Pittsburgh (PA), or New York/Connecticut United States
Interested in a Lower Limb Spasticity clinical trial? Learn more and participate today.

Solid Tumor patients United States
Clinical trial

Generalized Pustular patients United States
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial

Non-Small Cell Lung Cancer (NSCLC) United States
Clinical Trial and compensation will be discussed with those that are selected to participate

Hereditary Angioedema (HAE) patients United States
Clinical trial, all study-related costs, including those associated with travel to the study clinic, will be reimbursed

Melanoma patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate

Caregivers of unvaccinated (COVID-19) children ages 1-5 United States
Clinical Trial and compensation will be discussed with those that are selected to participate

Non-Hodgkin's Lymphoma patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate

Melanoma, Lung Cancer: Non -Small Cell Lung Cancer (NSCLC) patients United States
Clinical Trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/ed1d44e1-c9dc-4846-97d5-ae74331b4488?pv=1&utm_locale=en

Cytomegalovirus (CMV) United States
Clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/ec2d20f7-e305-4e9a-8ff2-7c1b7d1b198c?pv=1

Neurobehavioral Disinhibition United States
Clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/430a70e6-df78-49aa-91b0-8058b25f90dc?pv=1

Respiratory Syncytial Virus United States
Clinical trial and compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/e2fa61b1-0420-4f7c-a849-b27f1582e32d?pv=1

Diffuse Large B-Cell Lymphoma United States
Compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/ad761651-5441-4fd0-bfd7-5ab294cd63f1?pv=1

Atopic Dermatitis (Eczema) United States
Compensation will be discussed with those that are selected to participate
https://connect.trialscope.com/studies/614045ca-0c0e-4c51-910b-20f4404fcf59?pv=1&utm_locale=en

Canada

Cytomegalovirus (CMV) patients Canada
Clinical trial

Hereditary Angioedema (HAE) patients Canada
Clinical trial, all study-related costs, including those associated with travel to the study clinic, will be reimbursed

United Kingdom

No clinical trials at this time

Germany

Generalized Pustular patients Germany
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial

France

Generalized Pustular patients France
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial

Spain
Generalized Pustular patients Spain
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial

Australia

No clinical trials at this time

 

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