Patient and Family Caregiver Study Opportunities

United States

Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States
Participate in a 5-minute survey for a medical history platform and up to $90 per year for caregivers who complete brief surveys about their child's health

Acromegaly patients United States
90-minute web-assisted phone interview plus a 15-minute pre-read assignment, compensation is $180 for the interview and $30 for the pre-read assignment

Alopecia Areata (AA) patients United States
90-minute web-assisted phone interview, compensation is $150

Alzheimer's Disease (AD) patients over age 65 and caregivers ages 25-64 United States
30-minute web-assisted phone interview, compensation is $60

Amyloidosis: ATTR-CM or ATTR-PN patients United States
60-minute web-assisted phone interview, compensation is $120

Amyloidosis: ATTR-CM patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Atopic Dermatitis (Eczema) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120

Atopic Dermatitis (Eczema) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Bladder Cancer patients United States
20-minute online survey, compensation is $40

Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $120

Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60

Breast Cancer (BC): Metastatic patients United States
60-minute web-assisted phone interview, compensation is $120

Breast Cancer (BC) patients United States
30-minute web-assisted phone interview, compensation is $60

Breast Cancer (BC) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Breast Cancer (BC) patients ages 18-65 diagnosed within the last few years United States
15 minute online survey, compensation is $40

Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $150

Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States

Cardiovascular Disease, High Blood Pressure (Hypertension, HBP), Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150

Cervical Cancer, Endometrial Cancer, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Stomach (Gastric) Cancer patients United States
45-minute web-assisted phone interview, compensation is $150

Chronic Idiopathic Urticaria (CIU), Chronic Spontaneous Urticaria (CSU) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities,c compensation is $120

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
medical record service sign up, compensation is $75 for the initial signup

Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120

Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60

Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card

Crohn's Disease (CD), Microscopic Colitis, Ulcerative Colitis (UC) patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $210

Cushing's Syndrome (Hypercortisolism) patients and caregivers United States
60-minute web-cam interview with an optional 30-40 minute prework assignment, compensation is $120 for the interview and $75 for the prework assignment

Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167

Cutaneous Lupus Erythematosus (CLE) patients United States
70-min Virtual Ethnography via Recollective + 60-min Follow Up Interview via Zoom, Compensation is $140 for the Virtual Ethnography and $120 for the follow-up interview

Dementia caregivers United States
90-minute web-assisted phone interview plus a 60-minute follow-up web-assisted phone interview (confirmation of diagnosis required), compensation is $160 for the initial interview + $110 for the follow-up interview + $50 for confirmation of diagnosis

Desmoid Tumor male patients United States
60-minute web-assisted phone interview, compensation is $100

Diabetes (DM): Type 2, Obesity Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150

Dwarfism: Achondroplasia caregivers United States
30-minute online survey, compensation is $60

Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200

Eosinophilic Esophagitis (EOE) patients United States
60-minute web-assisted phone interview, compensation is $120

Epilepsy: Focal Seizures (Partial Seizures) patients and caregivers of pediatric patients (ages 1-17) who have taken Briviact United States
30-minute online survey, compensation is $60

Extensive-stage small cell lung cancer (SCLC) patients and caregivers United States

Heart Disease: Cardiomyopathy patients and caregivers United States

Heart Disease: Pericarditis patients United States
30-minute online survey, compensation is $105

Heart Disease: Heart Attack (MI), Stroke patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Hemophilia A patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Hemophilia A patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $30 for the homework assignment

Hemophilia B caregivers of patients born in 2007 or later United States
60-minute web-assisted phone interview, compensation is $120

Hepatitis: Hepatitis B (Hep B) patients United States
45-minute web-assisted phone interview, compensation is $90

Hepatitis: Hepatitis B (Hep B) patients who are immigrants from Asia, Pacific Islands, or Africa living in the United States
30-minute online survey, compensation is $35

Hepatitis: Hepatitis C (Hep C) Non-Caucasian male or female patients ages 18-55 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour

Hepatitis: Hepatitis C (Hep C) patients United States
20-minute online survey, compensation is $40

HER2 Positive Cancer patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Human Growth Hormone Deficiency (GHD), Muscle-Wasting Disease, Short Bowel Syndrome (SBS, Short Gut) patients in Chicago and Schaumburg, IL United States
60-minute in-person interview, compensation is $150

Huntington's Disease (HD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Hypophosphatasia (HPP) caregivers United States

Hypophosphatasia (HPP), Rickets (Osteomalacia), X-Linked Hypophosphatemia (XLH) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Immune Thrombocytopenic Purpura (ITP) patients United States
60-minute web-assisted phone interview, compensation is $120

IgA Nephropathy (Berger's Disease) patients and caregivers United States

Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients currently using Tyvaso DPI and caregivers United States
30-minute interview with the possibility of a 1 - 3.5 hour video creation opportunity, compensation is $50 for the initial interview and $100/hour for the video opportunity

Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $30 for the homework assignment

Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150

Kidney Disease: IgA Nephropathy (Berger's Disease) patients ages 18-64 in California, Connecticut, Florida, Illinois, Indiana, New Jersey, New York, Texas, Wisconsin United States
60-minute web-assisted phone interview, compensation is $250

Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $100

Liver Disease (not hepatitis): Biliary Atresia (BA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100

Liver Disease (not hepatitis): NASH/MASH Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150

Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
20-minute online survey, compensation is $40

Lupus: Lupus Nephritis (LN) non-caucasian, non-hispanic female patients United States
30-minute online survey, compensation is $60

Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-minute online survey, compensation is $60

Macular Degeneration: Geographic Atrophy patients ages 50+ and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Multiple Myeloma (MM) patients United States
20-minute online survey, compensation is $40

Multiple Myeloma (MM) patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview

Multiple Myeloma (MM) patients and caregivers United States
30-minute online survey, compensation is $60

Multiple Myeloma (MM) patients and caregivers United States
15-minute online survey, compensation is $30

Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
20-minute online survey, compensation is $40

Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS), Multiple Sclerosis (MS): Secondary Progressive MS (SPMS) caregivers United States
25-minute online survey, compensation is $50

Multiple System Atrophy (MSA) patients and caregivers United States
60-minute web-assisted phone interview and 40-minute pre-work assignment, compensation is $200

Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) caregivers United States
60-minute web-assited phone interview, compensation is $120

Myasthenia Gravis (MG), Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) caregivers of pediatric patients United States
60-minute web-assisted phone interview, compensation is $120

Myasthenia Gravis (MG) patients and caregivers in Denver, CO; Tampa, FL; Orlando, FL; Chicago, IL; Charlotte, NC; Raleigh, NC; Manhattan, NY; Cincinnati, OH; Columbus, OH United States
60-minute in-person interview, compensation is $180

Myelofibrosis (MF) patients United States
25-minute online survey, compensation is$50

Neuroendocrine Cancer (NET): Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Non-Clear Cell Renal Cell Carcinoma (Kidney Cancer, RCC) patients United States
60-minute web-assisted phone interview, compensation is $120

Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL), Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
30-minute online survey, compensation is $60

Osteoporosis Hispanic patients ages 55 and older United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour

Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150

Patients eligible for PrEP medications United States
60-minute web-assisted phone interview, compensation is $120

Pediatric Low-Grade Glioma (pLGG) caregivers of recently diagnosed patients ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120

Phenylketonuria (PKU) disengaged patients not currently taking pharmaceutical treatments or who have not seen a metabolic specialist or healthcare provider in the past year United States
60-minute online survey, compensation is $120

Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120

Primary Immunodeficiency: Activated PI3K-Delta Syndrome (APDS) patients United States
60-minute web-assisted phone interview, compensation is $125

Prostate Cancer patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview

Prostate Cancer patients ages 45+ United States
15-minute online survey, compensation is $30

Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations

Psoriasis (PsO), Psoriatic Arthritis (PsA) patients United States
30-minute online survey, compensation is $60

Psoriasis (PsO), Psoriatic Arthritis (PsA) patients United States
60-minute web-assisted phone interview, compensation is $120

Psoriasis (PSO), Psoriatic Arthritis (PsA) non-caucasian patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview

Rheumatoid Arthritis (RA) patients United States
30-minute online survey, compensation is $50

Rheumatoid Arthritis (RA) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Schizophrenia patients United States
30-minute online survey plus a 60-minute follow-up interview, compensation is $60 for the survey and $120 for the follow-up interview

Schizophrenia patients United States
30-minute online survey, compensation is $60

Schizophrenia patients who use Cobenfy and caregivers United States
20-minute online survey, compensation is $40

Scleroderma: Diffuse Systemic Scleroderma, Scleroderma: Limited, Scleroderma: Systemic Scleroderma patients United States
60-minute web-assisted phone interview, compensation is $125

Scleroderma, Systemic Sclerosis (SSc) patients United States
45-minute web-assisted phone interview, compensation is $100

Sickle Cell Disease (SCD) caregivers United States
30-minute online survey, compensation is $60

Sjogren's Syndrome (SjS, SS) male patients United States
60-minute web-assisted phone interview, compensation is $120

Stomach (Gastric) Cancer patients and caregivers United States
30-minute pre-work assignment plus a 60-minute web-assisted phone interview, compensation is $60 for the pre-work assignment and $120 for the interview

Thyroid Eye Disease (TED) female patients United States
30-minute online survey, compensation is $60

Ulcerative Colitis patients United States
30-minute online survey, compensation is $50

Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis

Vasculitis patients United States
60-minute web-assisted phone interview, compensation is $120

Vision Impairment: Retinitis Pigmentosa patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Vitiligo patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $130

Vitiligo patients ages 18-71 United States
20-minute online survey, compensation is $40

Canada

Amyloidosis: ATTR-CM patients Canada
60-minute web-assisted phone interview, compensation is $160 CAD

 

United Kingdom

Amyloidosis: ATTR-CM patients United Kingdom

Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)

Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)

Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP

Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP

Epidermolysis Bullosa (EB): Recessive Dystrophic Epidermolysis Bullosa patient advocacy groups (PAG's) United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP

Esophageal Cancer, Stomach (Gastric) Cancer, patients and caregivers United Kingdom
120-minute online bulletin board plus a 75-minute follow-up web-assisted phone interview for patients or a 90-minute web-assisted follow-up phone interview for patient/caregiver duo, compensation is 140 GBP for the online bulletin board, 88 GBP for the patient follow-up interview, and 105 GBP for the patient/caregiver follow-up interview

Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)

Hereditary Angioedema (HAE) patients United Kingdom
45-minute web-assisted phone interview or 30-minute online survey, compensation is 70 GBP for the interview and 50 GBP for the survey

Myopathy, Thyroid Eye Disease (TED) patients United Kingdom
60-minute web-assisted phone interview, compensation is 120 GBP

Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP

Prostate Cancer patients patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)

France

Amyloidosis: ATTR-CM patients France

Esophageal Cancer, Stomach (Gastric) Cancer patients and caregivers France
120-minute online bulletin board plus a 75-minute web-assisted follow-up phone interview for patients, compensation is 120 EUROS for the online bulletin board and 75 EUROS for the patient follow-up interview

Germany

Myopathy, Thyroid Eye Disease (TED) patients Germany
60-minute web-assisted phone interview, compensation is 80 Euros

Italy

Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)

Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)

Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)

Prostate Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)

Spain

More studies coming soon!

Australia

Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS

New Zealand

More studies coming soon!

 

Participate in Patient-Centric Clinical Trials

Rare Patient Voice presents various opportunities worldwide for patients and caregivers to participate in rare disease clinical trials with a patient-centric approach.

Sign up for these clinical trial opportunities and help move science forward today.

 

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