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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Patient and Family Caregiver Study Opportunities

As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour.

We have hundreds of 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 patient-centric study listed below, please contact study.inquiries@rarepatientvoice.com

If you are NOT 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 rare disease research studies listed below and any other similar studies.

Feel free to also share this page with friends or family who may be interested in participating in rare disease studies.

Sign Up Here!

United States

Achondroplasia adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.

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 Patients and Caregivers United States
60-minute web-assisted phone interview, compensation is $120

Antisynthetase Syndrome, Dermatomyositis, Immune-Mediated Necrotizing Myopathy, Myasthenias patients United States
60-minute web-assisted phone interview, compensation is $120

Atrial Fibrillation (AFIB) patients diagnosed within the last 18 months United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $120 for the interview and $60 for confirmation of diagnosis

Avoidant Restrictive Food Intake Disorder (ARFID), Cancer, Cerebral Palsy, Cystic Fibrosis, Irritable Bowel Syndrome (IBS) caregivers (Ages 18 Months to 3 Years) United States
90-minute web-assisted phone interview plus a 30-minute diary, compensation is $180 for the interview and $60 for the diary

Bladder Cancer, Melanoma, Renal Cell Carcinoma, Stomach Cancer Patients & Caregivers United States
40-minute online survey, compensation is $80

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, Multiple Sclerosis (MS), Paroxysmal Nocturnal Hemoglobinuria (PNH), Psoriasis Patients United States
20-minute online survey, compensation is $40

Breast Cancer patients (ages 35-75) United States
20-minute online survey, compensation is $40

Breast Cancer patients United States
This is a 5-minute online survey for free access to a medical record collection service.

Cervical Cancer patients (diagnosed withing the last 5 years) United States
60-minute web-assisted phone interview (WATI) + 15-minute homework, compensation is $150

Chronic or Congestive Heart Failure patients (40-64 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120

Chronic Kidney Disease (CKD) Patients United States
30-minute online survey + confirmation of diagnosis required (COD), compensation is $110

Chronic obstructive pulmonary disease (COPD) Patients and Patients/Caregiver Duos - Los Angeles and surrounding area United States
80-minute in-person interview, compensation is $240

Chronic Spontaneous or Idiopathic Urticaria patients United States
60-minute online interview, compensation is $125 (interview) and $50 (POC-proof of confirmation)

Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)

Clostridium Difficile (C Diff) male patients United States
10-minute online survey, compensation is $25

Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward

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

Congenital Adrenal Hyperplasia patients United States
30-minute web-assisted phone interview, compensation is $120

Coronary Artery Disease (CAD) patients ages 60-75 United States
60-minute web-assisted phone interview + 10-minute pre-work, Compensation is $120 + $25 for pre-work

Crohn's Disease (CD), Eczema, Juvenile Idiopathic Arthritis, Psoriatic Arthritis (PsA) or Ulcerative Colitis adolescent patients and caregivers (living in Philadelphia) United States
30-minute training & 75-minute interview or a 75-minute interview, compensation training is $100, interview is $225

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)

Diffuse Large B Cell Lymphoma (DLBCL) patients United States

Duchenne Muscular Dystrophy (DMD) Caregivers of Patients under age 5 United States
60-minute web-assisted phone interview, compensation is $120

Duchenne Muscular Dystrophy (DMD) Patients and Caregivers (Caregivers must be for Patients under age 30) United States
60-minute web-assisted phone interview, compensation is $120

Dupytren’s of the Foot, Fibromas, Ledderhose Disease, Plantar Fibromatosis patients United States
60-minute web-assisted phone interview, compensation is $120

End Stage Renal Disease (ESRD) patients & caregivers United States in the CA, OH, TX area
120-minute web-assisted phone interview, compensation is $90

Eosinophilic Esophagitis (EOE) Caregivers (Ages 1-17) & Patients (Ages 18-60) United States
60-minute web-assisted phone interview, compensation is $120

Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120

Gout Patients United States
60-minute web-assisted phone interview, compensation is $120

Growth Hormone Deficiency patients and caregivers (3-12 years) United States
45-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), compensation is $125

Heart Disease patients (Los Angeles, CA; New Orleans, LA) United States
In-person interview, compensation is $180/hr

Hemophilia A & B Patients & Caregivers United States
30-minute online survey, compensation is $60

Hemophilia B patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120

Hemophilia patients and caregivers United States
60-minute in-person interview, compensation is $225

Hepatitis D patients United States
30-minute activities during a 2-3 week time period, compensation is $60

Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $180

Hidradenitis Suppurativa patients ages 18-54 United States
20-minute online survey, compensation is $60

Huntington'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

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

Infertility patients and donors United States
60-minute web-assisted phone interview, compensation is $120

Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), OR Pulmonary Fibrosis (PF) patients (currently using or have used Tyvaso Nebulizer or Tyvaso DPI) United States
60-minute web-assisted zoom interview (WATI), compensation is $120

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

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

Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120

Metastatic Breast Cancer Patients United States
30-minute web-assisted phone interview, compensation is $60

Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30

Mitochondrial Myopathy Patients United States
60-minute web-assisted phone interview, compensation is $125

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

Multiple Sclerosis (MS) Patients under 35 United States
60-minute web-assisted phone interview, compensation is $120

Multiple Sclerosis 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

Myasthenia Gravis caregivers United States
45-minute online survey, compensation is $90

Myasthenia Gravis (MG) patients (diagnosed in last 2 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120

Myasthenia Gravis (MG) Patients Ages 50 and under diagnosed within the last 3 years United States
60-minute web-assisted phone interview, compensation is $120

Neuromyelitis Optica (NMO) Patients United States
45-minute online survey, compensation is $90

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

Nontuberculous Mycobacterial (NTM) patients United States Eligible study participants will be paid up to $450 ($300 for participation in a 2-hour study interview [can be completed in two 1-hour sessions] and $150 for an additional 1-hour study interview).

Ornithine Transcarbamylase Deficiency (OTC) patients & caregivers United States
60-minute web-assisted phone interview, compensation is $180

Ovarian Cancer Patients & Caregivers United States
15-minute online survey, compensation $80

Ovarian Cancer Patients & Caregivers United States
15-Minute online survey, compensation $30

Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30

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)

Peyronie's Disease patients United States
in-person interviews

Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120

Relapsing Remitting Multiple Sclerosis (RRMS) Patients ages 18-30 United States
30-minute online survey, compensation is $60

Relapsing Remitting Multiple Sclerosis (RRMS) Spanish speaking patients United States
60-minute web-assisted phone interview, compensation is $150

Renal Cell Carcinoma (RCC) Patients United States
30-minute online-survey, compensation is $80

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

Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150

Spinal Muscular Atrophy (SMA) Caregivers United States
45-minute online survey, compensation is $90

Spinal Muscular Atrophy Patients United States
30-minute online survey, compensation is $55

Systemic Mastocytosis patients United States
20-minute online survey, compensation is $40

Tourette Syndrome patients (ages 18-30) & caregivers (of patients ages 18-30) United States
60-minute web-assisted phone interview, compensation is $120

Vasculitis patients United States
90-minute web-assisted phone interview (WATI), compensation is $158

Wet Macular Degeneration Patients United States
60-minute web-assisted phone interview, compensation is $120

Wet Macular Degeneration patients United States
60-minute web-assisted phone interview (WATI), compensation is $105

 

United Kingdom

Amyloidosis patients United Kingdom
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $198.65

Chronic Lymphocytic Leukemia (CLL) patients & caregivers ages 50+ United Kingdom
60-minute web-assisted phone interview, compensation is a 90 GBP gift card

Hepatitis D patients United Kingdom
30-minute activities during a 2-3 week time period, compensation is $60

Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD

Secondary Immune Deficiency (SID) Patients United Kingdom
60-minute web-assisted phone interview + 15-minute prework, compensation is 75 GBP (interview) + 20 GBP (prework)

Spinal Muscular Atrophy (SMA) Caregivers United Kingdom
45-minute online survey, compensation is 75 GBP

Wet Macular Degeneration patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 49 GBP


Canada

Amyloidosis patients Canada
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $275


France

Hemophilia A patients France
30-minute web-assisted phone interview (WATI), compensation is 55 EUR

Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 80 EUR

Wet Macular Degeneration patients France
60-minute web-assisted phone interview (WATI), compensation is 40 Euro


Germany

Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Germany
5-hour web-assisted phone interview (WATI), compensation is 250 EUR

Hemophilia A patients Germany
30-minute web-assisted phone interview (WATI), compensation is 55 EUR

Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR

Secondary Immune Deficiency (SID) Patients Germany
60-minute web-assisted phone interview + 15-minute prework, compensation is 80 EUR (interview) + 20 EUR (prework)

Spinal Muscular Atrophy (SMA) Caregivers Germany
45-minute online survey, compensation is 85 EUR

Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros

Wet Macular Degeneration patientsGermany
60-minute web-assisted phone interview (WATI), compensation is 50 Euro


Italy

Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Italy
5-hour web-assisted phone interview (WATI), compensation is 480 EUR

Spinal Muscular Atrophy (SMA) Caregivers Italy
45-minute online survey, compensation is 85 EUR

Wet Macular Degeneration patients Italy
60-minute web-assisted phone interview (WATI), compensation is 54 EUR


Spain

Wet Macular Degeneration patients Spain
60-minute web-assisted phone interview (WATI), compensation is 37 EUR


Australia

More studies coming soon!


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.

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