Reading Time: 4 minutes
“Rate Patient Voice” has hundreds of market research studies open for patients and caregivers.
Make your voice heard by participating in paid surveys, interviews, and online communities! Sign up and start talking to the right people. It’s free, and they accept rare and non-rare diagnoses!
If you are looking for study volunteer opportunities, please complete their sign-up process and include all medical conditions to be considered for one or more of the rare disease research studies listed below and any other similar studies.
Here is a sampling of the studies they are working to fill (as of March 2023)
Achondroplasia adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United States
60-minute web-assisted phone interview, compensation is $120
Alzheimer’s Male Caregivers United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $160 for the interview and $50 for confirmation of diagnosis
Amyloidosis: Hereditary (hTTR) patients and caregivers United States
240-minute online community, compensation is $480
Atopic Dermatitis caregivers of patients under age 12 United States
60-minute web-assisted phone interview, compensation is $120
Bone Marrow Transplant, Collagen Vascular Disease, Graft Versus Host Disease (GVHD), Organ Transplant or Systemic Sclerosis (Scleroderma) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Breast Cancer-Stage IV patients United States
2 Week Passive App Tracking, compensation is $60
Chronic Kidney Disease (CKD) or End-Stage Renal Disease (ESRD) patients, caregivers, or patient advocacy group employees 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
Chronic Lymphocytic Leukemia (CLL), Diffuse Large B Cell Lymphoma (DLBCL), or Multiple Myeloma (MM) patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Chronic Lymphocytic Leukemia (CLL) or Mantle Cell Leukemia (MCL) patients United States
4-hour virtual focus group via Zoom, compensation is $480
Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
2 week passive app tracking, compensation is $60
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
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 Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Demodex Blepharitis patients United States
45-minute online survey, compensation is $90
Diabetic Macular Edema (DME) or Retinal Vein Occlusion (RVO) patients in the Chicago (1/31-2/2), New Jersey, or New York areas United States
2.5 hour in-home/in-person interview plus a 30-minute homework assignment, compensation is $450 for the interview and $50 for the homework assignment
Diffuse B Cell Lymphoma OR Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute pretask, compensation is $200
Endometrial Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Epidermolysis Bullosa (EB) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $150
Epilepsy: Infantile Spasms (IS) or Tuberous Sclerosis (TSC) Caregivers of children ages 0-8 who have used the following medications within the last 4 years on a child: SABRIL Powder for Oral Solution, Vigabatrin Powder for Oral Solution, or Vigadrone Powder for Oral Solution in the Chicago, Boston, New York City, or Miami Metro areas United States
120-minute in person interview, compensation is $360
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $180
Hodgkins Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
Idiopathic Inflammatory Myopathies (IIMs) with one of the subtypes: Anti-Synthetase Syndrome (ASyS), Dermatomyositis (DM), or Immune-Mediated Necrotizing Myopathy (IMNM) patients (age 18+) United States
90-minute web-assisted phone interview, compensation is $165 for the interview + $25 for full screening
IgA nephropathy (Berger’s Disease) patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Immune Thrombocytopenic Purpura (ITP) patients United States
Will require between 5 to 30 minutes of your time, compensation is $43
Juvenile Arthritis (JA) or Giant Cell Arteritis (GCA) adolescent patients or caregivers of adolescents United States
60-75-minutes in-person interview, compensation is from $150
Juvenile Idiopathic Arthritis (JIA) caregivers of children in New York, NY; Atlanta, GA; Raleigh, NC; Chicago, IL; and Philadelphia, PA United States
60-minute in-person interview, compensation is $500
Kidney Disease: Immune Complex-Mediated Membranoproliferative Glomerulonephritis (IC-MPGN, ICGN, Ig-MPGN) patients & caregivers United States United States
60-minute web-assisted phone interview, compensation is $120
Leukemia or Non-Hodgkin’s Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
Liver Disease (not hepatitis): NASH patients ages 18+ United States
30-minute online survey, compensation is $44
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC)-Stage IV patients United States
60-minute web-assisted phone interview, compensation is $120
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Melanoma, Non-Small Cell Lung Cancer (NSCLC) patients United States
25 minute online survey, compensation is $50
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Myelopathy: HTLV-1 Associated Myelopathy (HAM)/Tropical Spastic Paraparesis (TSP) patients United States
60-minute web-assisted phone interview, compensation is $120
Myotonic Muscular Dystrophy (MMD) patients United States
45-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $90 for the interview and $30 for the homework assignment
Non-Small Cell Lung Cancer (NSCLC) Patients United States
40-minute online survey, compensation is $80
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Non-Small Cell Lung Cancer (NSCLC) stage IV patients and caregivers of patients (age 22-75) diagnosed within the last 6 months to 5 years United States
60-minute web-assisted phone interview, compensation is $120
Opioid Addiction patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Organic Acidemia (OA): Methylmalonic Acidemia (MMA) & Propionic Acidemia (PA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Ornithine Transcarbamylase Deficiency (OTC) patients & caregivers United States
60-minute web-assisted phone interview, compensation is $180
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Pediatric Bone Marrow Transplant (BMT) (Stem Cell Transplant) caregivers for patients under age 18 United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120
Prurigo Nodularis patients United States
60-minute web-assisted phone interview, compensation is $175
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Sepsis ExPEC patients United States
30-minute web-assisted phone interview plus possible in-person filming, compensation is $60 for the interview and hourly for the filming
Sleep Apnea Inspire Implant user patients United States
30-minute web-assisted phone interview, compensation is $60
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
Source: https://rarepatientvoice.com/
The post Patient and Family Caregiver Study Opportunities appeared first on Family Caregivers Online.