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Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Newsletter #54 – November 16, 2023

Rare Patient Voice illustration banner

What's New at Rare Patient Voice?

Curious Why You Didn’t Qualify for a Study?

We realize it is disappointing when you don’t qualify for a study. In this video, RPV President Wes Michael explains why you may not have qualified for a study, why it’s nothing to take personally, and the monthly raffle you are automatically entered into.

We Still Value Your Time, Even If You Don’t Qualify

We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Lisa!

Partner Corner

Josh Provides Epilepsy Assistance Foundation logo
Epilepsy is the fourth most common neurological disorder and 1 in 26 people will experience a seizure in their lifetime. With over forty types of seizures and no known cure, epilepsy can strike anyone, anytime, and anywhere. Education, community awareness, and dispelling the myths and misconceptions surrounding seizures is vitally important. The mission of JoshProvides Epilepsy Assistance Foundation is, “To improve the quality of life for those living with epilepsy and other seizure disorders.”

JoshProvides assists children, families, and individuals with seizure detection & alert devices, transportation to medical appointments while they are prohibited from driving, medical services, and community education & awareness.  Each program has specific criteria and a funding cap. In addition, JoshProvides sponsors an Epilepsy Support Group which meets virtually twice a month to keep families and individuals connected to community and share local resources.   The Epilepsy Support Group offers a community connection and resources to combat social isolation too often associated with epilepsy.

For details about our programs and services and learn about our funding criteria and caps, visit our website at www.JoshProvides.org or call 1-800-706-2740.

Referrals?

Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner

Staff Spotlight

Get to know our team! This month, meet Cheryll Davies, Assistant Project Manager for  Rare Patient Voice.

Cheryll Davies
A graduate of Pennsylvania’s Marywood University with a BFA in Graphic Design, Cheryll worked as a graphic artist and customer workflow coordinator at a local newspaper after college. Working in a customer focused role for over a decade prepared Cheryll to cultivate relationships with new and standing clients in her position at Rare Patient Voice, which she took on in 2022.

“I am proud to work at RPV because I know our work here is truly making a difference in the lives of patients and caregivers. My personal experience having a loved one diagnosed with a rare condition offers me the perspective to really connect with the many patients and family caregivers with whom I come into contact.”

In addition to taking motorcycle trips with her fiance and spending time with their puggle, Daisy, Cheryll enjoys baking, gardening, and crafting.

Current Study Opportunities

We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.

1. 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, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.

Please feel free to share this page with friends or family who might be interested!

United States

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

Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150

Ankylosing Spondylitis, Plaque Psoriasis, Psoriatic Arthritis or Rheumatoid Arthritis Patients who use Stelara, Simponi ARIA, Tremfya, Simponi injection United States
10-minute online survey, compensation is $25

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

Asthma or Chronic Obstructive Pulmonary Disease (COPD) caregivers United States
75-minute web-assisted phone interview (WATI) + 25-minutes homework, compensation is $200

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 Patients and Caregivers United States
60 minute web-assisted phone interview plus possible mobile ethnography, compensation is $150 for the interview and $250 for completion of the mobile ethnography

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.

Cerebral Amyloid Angiopathy (CAA) caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120

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 Inflammatory Demyelinating Polyneuropathy (CIDP) Patients and Caregivers United States
30-45 minute web-assisted phone interview, compensation is $60-$90

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

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

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) 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

Colorectal (Colon) Cancer Patients and Caregivers Stage IV United States
15-min pre-test & 60-min web-assisted phone interview via Zoom, compensation is $125

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

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

Down Syndrome and Alzheimers Caregivers United States
10-minute online survey, compensation is $25

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

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

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

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

HIV non-caucasian patients United States
20 minute online survey, compensation is $40

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

Huntington’s Disease, Tardive Dyskinesia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120

Idiopathic Pulmonary Fibrosis (IPF) United States
60-minute web-assisted phone interview (WATI), compensation is $120

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
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

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

Melanoma Non-Caucasian Patients United States
60-minute web-assisted phone interview + tech check, compensation is $125

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 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

Narcolepsy, Idiopathic Hypersomnia Male Patients United States
Two 60-minute web-assisted phone interviews, compensation is $100 initial interview and $150 followup interview

Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150

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

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).

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

Overactive Bladder (OAB) patients (have used Botox) United States
60-minute web-assisted phone interview (WATI), compensation is $200

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)

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

Pulmonary Arterial Hypertension (PAH) patients (17-25 years) that are using an infusion pump or are pump-experienced (living in Los Angeles or Phoenix) United States
6-hour in-person interview, compensation is $750

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

Spinocerebellar Ataxia (SCA) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120

Stomach Cancer Patients United States
30-minute voice-response survey (10-minute survey + 20-minute VRS), compensation is $60 Amazon Gift Card

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

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

Idiopathic Pulmonary Fibrosis (IPF) United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 100 GBP

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

Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150

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

Idiopathic Pulmonary Fibrosis (IPF) Italy
60-minute web-assisted phone interview (WATI), compensation is 115 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

Idiopathic Pulmonary Fibrosis (IPF) Spain
60-minute web-assisted phone interview (WATI), compensation is 115 EUR

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

Frequently Asked Questions

Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.

How will I be paid?
As of January 1, 2023, you will earn $120 per hour (typically) for participating in new studies. We pay by check to ensure patients can use their compensation in any way they wish.

About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $13 million dollars since 2013 for participating in research studies.

 

To read more newsletters, click here.

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  • Meet Our Team: Sara Prosic, Business Development Associate
  • Wes Michael Talks Empowering Patients Through Research

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