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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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      • Hemophilia
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  • Blog
    • Patient Blog
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  • 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

Study Opportunities for Patients and Caregivers

We currently have over 200 market research studies open for patients and caregivers.  A few of the studies 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 a member and you 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 studies listed below and any other similar studies.

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

Sign Up Here!

United States

Neuromyelitis Optica Spectrum Disorder (NMOSD) patients United States SRI_5884 Wave 2
20-minute online survey, compensation is $35

Pancreatic or Endometrial cancer patients and caregivers United States MED_6807
15-minute online survey, compensation is $25

X-Linked Hypophosphatemia (XLH) young adult patients and caregivers United States SHG_6813
60-minute web-assisted phone interview, compensation is $100

Rheumatoid Arthritis (RA) patients United States ATH_6685
30-minute web-assisted phone interview, compensation is $50

Non-Small Cell Lung Cancer patients United States CHP_6769
60-minute web-assisted phone interview, compensation is $100

Lupus caregivers United States CHTH_6734
30-minute web-assisted phone interview (Zoom), compensation is $50

Over Active Bladder (OAB) patients diagnosed with OAB and using “Implanted Sacral Nerve Stimulator” to treat their OAB United States DYN_6770
30-minute web-assisted phone interview, compensation is $50

Ulcerative Colitis (UC) patients United States DYN_6679
45-minute online survey, compensation is $75

Phenylketonuria (PKU) patients and caregivers United States SHG_6801
30-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $50 for the interview and $25 for the homework (up to $75 total)

Gaucher Disease patients and caregivers United States BV_6806
60-minute web-assisted phone interview, compensation is $100

Sickle Cell Disease (SCD) caregivers United States JWW_6729
60-minute web-assisted phone interview, compensation is $150

Endometrial Cancer, Renal Cell Carcinoma, or Liver Cancer patients that are advanced/metastatic 1L or 2L United States HEU_6652
60-minute web-assisted phone interview, compensation is $100

Parkinson's Disease or PAH patients United States ATH_6596
60-minute web-assisted phone interview, compensation is $100

Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis, Crohn’s Disease or Ulcerative Colitis patients United States HSP_6799
60-minute web-assisted phone interview, compensation is $100

Ankylosing Spondylitis (AS) - non-Caucasian patients United States MCY_6639
60-minute web-assisted phone interview, compensation is $100

Short Bowel Syndrome (SBS) and/or Stroke adult patients who have started tube feeding within the past 12 months United States WMT_6678
50-minute web-assisted phone interview, compensation is $85

Human Growth Hormone Deficiency caregivers United States GP_6732
75-minute web-assisted phone interview, compensation is $125

Cervical Cancer patients United States GP_6587
60-minute web-assisted phone interview, compensation is $125

Breast Cancer (metastatic) patients United States MED_6615
30-minute online survey, compensation is $50

Prostate Cancer patients United States GP_6326 Wave 2
25-minute online survey, compensation is $50

HIV patients that are younger than 25 or older than 65 United States KPD_6494
30-minute online survey, compensation is $50

Vision Impairment patients and caregivers United States REAR_6318
30-minute online survey, compensation is $50

Primary Immunodeficiency (PID) patients and caregivers United States LE_6750
60-minute web-assisted phone interview, compensation is $100

Mantle Cell Lymphoma (MCL) patients United States SCH_6715
30-minute online survey, compensation is $50

Hemophilia A patients who are currently or have previously used Esperoct United States CR_6728
60-minute web-assisted phone interview, compensation is $100

Eosinophilic Esophagitis (EoE), and/or Short Bowel Syndrome (SBS), and/or Allergies patients and caregivers United States CUE_6725
20-minute online survey, compensation is $35

Lupus Nephritis (LN) patients United States AIS_6720
60-minute webcam interview, compensation is $100

Myopathy patients United States GP_6682
60-minute web-assisted phone interview, compensation is $150

Pancreatic Cancer patients and caregivers United States LAG_6718
60-minute web-assisted phone interview, compensation is $100

End Stage Renal Disease (ESRD) or Chronic Kidney Disease (CKD) patients and caregivers United States HFCS_6701
In-person interviews for those living near Manchester NH, two week long study consisting of approximately 35 hours on site in NH, compensation is $2000 for patients and $1500 for caregivers

Kidney Transplant patients and caregivers United States M3_6620
60-minute web-assisted phone interview, compensation is $100

Sickle Cell Disease (SCD) - non-Caucasian patients ages 18-25 United States ZS_6707
90-minute web-assisted phone interview, compensation is $150

Hidradenitis Suppurativa (HS) patients United States BPR_6675
30-minute online survey, compensation is $40

Idiopathic Pulmonary Fibrosis (IPF) patients age 50-70 and caregivers of patients age 50-75 United States BEE_6618
60-minute web-assisted phone interview, compensation is $100

Kidney Transplant - at risk for AMR (anti-body mediated rejection) patients United States GP_6555
90-minute web-assisted phone interview, compensation is $150

Colorectal Cancer (Colon Cancer) patients United States MVR_6671
90-minute web-assisted phone interview, compensation is $300

Ankylosing Spondylitis or Non-Radiographic Axial Spondyloarthritis patients United States M3_6617
60-minute web-assisted phone interview, compensation $100

Spinal Muscular Atrophy patients & caregivers (of infants) United States PSL_6574
60-minute web-assisted phone interview, compensation is $100

Narcolepsy Type 1 with Cataplexy male patients United States LR_6578
30-minute online survey, compensation is $45

Binge Eating Disorder patients United States HV_6546
30-minute screening call to determine eligibility for yearlong community that pays $100 per hour of participation. Compensation for the screening call is $35

Polymyositis patients United States TRP_6518
60-minute web-assisted phone interview, compensation is $100

Prostate Cancer patients United States GP_6565
60-minute web-assisted phone interview, compensation is $150

Prurigo Nodularis (PN) patients United States COM_6544
Online community compensation is $10 as a welcome when you join the community and participate in the community. Additional compensation opportunities will arise for community members that are active.

Pulmonary Arterial Hypertension (PAH) patients United States QUAM_6327
60-minute zoom interview, compensation is $100

Urinary Tract Infection (UTI) patients United States PHARV_6554
60-minute web-assisted phone interview, compensation is $100

Autosomal Dominant Polycystic Kidney Disease (ADPKD) patients United States IPS_6513
60-minute phone interview, compensation is $150

Breast Cancer patients United States ZS_6522
60-minute online forum, compensation is $100

Non-Small Cell Lung Cancer (NSCLC) patients United States LAG_6511
60-minute webcam interview (plus homework), compensation is $200

Paroxysmal Nocturnal Hemoglobinuria patients & caregivers United States TRI_6197
60-minuteweb-assisted phone interview, compensation is $100

WHIM Syndrome patients & caregivers United States RMR_6517
60-minute web-assisted phone interview, compensation is $100

Psoriasis patients United States GP_6305
30-minute online survey compensation is $50

Multiple Myeloma patients United States GP_6473
90-minute web-assisted phone interview (or two 45 min interviews if the patient prefers), compensation is $210

Burkitt Lymphoma or B-Cell Lymphoma patients United States RP_6484
2-minute online survey no reward

Hemophilia patients & caregivers United States REAC_6423
5-min online survey with no compensation (some participants may be selected for an in-person study)

Thyroid Eye Disease (TED) male patients United States 21G_6335
Year-long study (consists of 4 web-assisted phone interviews), payment upon completion of tasks

Liver Conditions - Autoimmune Hepatitis (AIH), Hepatitis B, Hepatitis C, NASH, NAFLD or Primary Sclerosing Cholangitis (PSC) United States XYZ_6258
150-minute online survey and daily diaries, compensation is $275

Uterine Fibroids patients United States IPS_6179
60-minute web-assisted phone interview, compensation is $100

Amyotrophic Lateral Sclerosis (ALS) patients & caregivers United States PICH_5650
5-10-minute online survey for medical history platform, compensation is $25

Pompe Disease patients United States PICH_5652
5-minuteonline survey for medical history platform, compensation is $20

Vulvar HSIL patients United States RTI_5017
30-minute online survey, compensation is $100

Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States PHO_2397
30-minute online survey, compensation is $50

Organ Transplant patients United States AV_5244
60-minute phone interview, compensation is $120

United States Clinical Trials:

Adult patients ages 18-75 that have not had the influenza vaccination within the last 6 months United States IFMA_6645
Clinical trial and compensation will be discussed with those that are selected to participate

Respiratory Syncytial Virus (RSV) patients United States IFMA_6453
The total length of participation in this clinical trial is approximately 2 years (25 months). It includes up to 8 trial visits and 26 brief communications (via telephone, email, or text message) participants will be compensated for their time

Restless Leg Syndrome United States IFMA_6307
24 week-long Clinical Trial and Compensation will be discussed with those that are selected to participate

Cytomegalovirus (CMV) United States IFMA_6311
18-month long Clinical Trial and Compensation will be discussed with those that are selected to participate

Click here for more clinical trial opportunities!


United Kingdom

Pyoderma Gangrenosum Patients UK LSP_6191
60-minute web-assisted phone interview, compensation is £95

Organ Transplant Patients United Kingdom AV_5244
60 min Phone Interview and Compensation is £75


Canada

Non-Small Cell Lung Cancer (NSCLC) patients Canada QUR_6709
90-minute web-assisted phone interview (and homework), compensation is CAD 280

Chronic Lymphocytic Leukemia patients and caregivers Canada QUR_6705
90-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is CAD 240

Organ Transplant, Blood Cancer, or Cytomegalovirus (CMV) patients & caregivers Canada HUM_6445
90-minute web-assisted phone interview (plus a 30-min homework assignment), compensation is 220 CAD

Liver Conditions - Autoimmune Hepatitis (AIH), Hepatitis B, Hepatitis C, NASH, NAFLD or Primary Sclerosing Cholangitis (PSC) Canada XYZ_6258
150-minute online survey and daily diaries, compensation is 330 CAD

Organ Transplant Patients Canada AV_5244
60 min Phone Interview and Compensation is 80 CAD


France

Pyoderma Gangrenosum Patients France LSP_6191
60-min web-assisted phone interview compensation is 110€


Germany

Beta Thalassemia and/or Sickle Cell Disease (SCD) patients and caregivers Germany TRP_6758
25-minute online survey, compensation is 50 EUR

Pyoderma Gangrenosum Patients Germany LSP_6191
60-min web-assisted phone interview compensation is 110€

 

Italy

Beta Thalassemia and/or Sickle Cell Disease (SCD) patients and caregivers Italy TRP_6758
25-minute online survey, compensation is 40 EUR

Pyoderma Gangrenosum Patients Italy LSP_6191
60-min web-assisted phone interview compensation is 90€


Spain

Pyoderma Gangrenosum Patients Spain LSP_6191
60-min web-assisted phone interview compensation is 90€


Australia

More studies coming soon!


New Zealand

More studies coming soon!

 

 

 

Please contact study.inquiries@rarepatientvoice.com with any questions.

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