What's New at Rare Patient Voice?
Study Results
Throughout the COVID-19 pandemic, patients have started using telehealth more often. In a recent study, we asked patients about their feelings about telehealth and their experiences. Patients are in favor of using telehealth because they perceive it is safer, they do not need to travel, and it is more convenient for them than going into their doctor’s office.
Patients are in favor of using telehealth because they perceive it is safer, they do not need to travel, and it is more convenient for them than going into their doctor’s office.
Reasons that patients might not use Telehealth include lack of precision and concerns with technology glitches.
Spread the RPV Word & Receive a Rarity Plushie!
Please help us spread the word to other patients and caregivers about Rare Patient Voice by submitting a short video about your experience with us. Videos will be featured on our website, on social media, and in newsletters. Check out the growing group of RPV patients and caregivers who have recorded stories! https://rarepatientvoice.com#sharevoice
Follow these steps to record and submit your own video!
Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!
https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Natalie of California, our January 3 raffle winner! Our next raffle will be held in early February.
Partner Corner
Elephants and Tea is a nonprofit media company with the mission to help adolescent and young adult (AYA) patients, survivors, and caregivers know they are not alone in their fight with cancer.
The Elephant in the room is cancer. Tea is the relief conversation provides.
Referrals?
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Current Study Opportunities
We currently have 247 studies open for patients and caregivers! Some 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, 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
IgA Nephropathy (Berger's Disease) Patients United States ASC_6033
60 min Web-Assisted Phone Interview and Compensation is $100
Endometriosis Patients United States GP_6132
25 min Online Survey and Compensation is $45
Thyroid Eye Disease (TED) Patients United States CHP_6247
60 min Zoom Interview and Compensation is $100
Chronic Lymphocytic Leukemia (CLL) Patients and Caregivers United States CHP_6304
60 min Web-Assisted Phone Interview and Compensation is $100
Heart Failure United States FCAT_6052
150 min Web-Assisted Phone Interview (plus Homework) and Compensation is $300
Pompe Disease United States PICH_5652
5 min Online Survey for Medical History Platform and Compensation is $20
Multiple Sclerosis (MS) United States PICH_4373_W2
5 min Online Survey for Medical History Platform and Compensation is $25
Paroxysmal Nocturnal Hemoglobinuria (PNH) United States PICH_4376
5 min Online Survey for Medical History Platform and Compensation is $250
MDD, Bipolar, Schizophrenia, Depression United States MAD_6064
60 min Web-Assisted Phone Interview and Compensation is $100
Relapsing Remitting Multiple Sclerosis (RRMS), Secondary Progressive Multiple Sclerosis (SPMS), Clinically Isolated Syndrome (CIS) United States IPS_6070
15 min Online Survey and Compensation is $35
Chronic Lymphocytic Leukemia (CLL), Mantle Cell Lymphoma, Marginal Zone B-Cell Lymphoma, Lymphoplasmacytic Lymphoma, or Waldenstrom Macroglobulinemia, Graft Versus Host Disease United States RRI_6245
25 min Online Survey and Compensation is $45
Uterine Fibroids United States IPS_6179
60 min Web-Assisted Phone Interview and Compensation is $100
Limb Girdle Muscular Dystrophy (LGMD) United States BPR_6122 W2
60 min Web-Assisted Phone Interview (plus Homework) and Compensation is $150
Gout, or Thyroid Eye Disease (TED) United States APOL_6256
10 min Online Survey and Compensation is $20
Non-Small Cell Lung Cancer (NSCLC) United States IQV_3109 W7
40 min Online Survey and Compensation is $75
Thrombotic Thrombocytopenic Purpura (TTP) United States RPT_6257
60 min Web-Assisted Phone Interview and Compensation is $100
Homocystinuria (HCU) – Caregivers United States GP_6272
60 min Web-Assisted Phone Interview and Compensation is $180
Infantile Fibrosarcoma, Pediatric Thyroid Cancer, Pediatric Central Nervous System Cancer (CNS) - Caregivers United States PUT_6237
60 min Web-Assisted Phone Interview and Compensation is $100
Stasis Dermatitis United States TRP_6194
60 min Web-Assisted Phone Interview and Compensation is $135
Pseudobulbar affect (PBA) United States JWW_6241
Activity request and compensation varies based on participation assignment and completion
Esophagus (Esophageal) Cancer Patients and Caregivers United States PUT_6259
60 min Web-Assisted Phone Interview and Compensation is $200
Beta Thalassemia Caregivers United States M3_6106
75 min Web-Assisted Phone Interview (plus Homework) and Compensation is $125
Hemophilia A & B United States M3_6211
60 min Web-Assisted Phone Interview (plus Homework) and Compensation is $135
Liver Disease: PFIC (Progressive Familial Intrahepatic Cholestasis) United States VCN_6292
60 min Telephone Interview and Compensation is $100
Spinal Muscular Atrophy (SMA) United States ZS_5866
60 min Web-Assisted Phone Interview – (Caregivers with their Patients) and Compensation is $100
Plexiform Neurofibromas - Caregivers United States PHILR_631760 min Web-Assisted Phone Interview and Compensation is $100
Systemic Lupus Erythematosus (SLE) United States M360_6287
30 min Online Survey and Compensation is $50
Organ Transplant Patients United States AV_5244
60 min Phone Interview and Compensation is $120
Huntington Disease or Tardive Dyskinesia Patients United States M3_5317
75 min Phone Interview and Compensation is $125
Behavioral Variant FTD Caregivers United States GP_5476
90 min Web-Assisted Phone Interview and Compensation is $150
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis Patients United States PHO_2397
30 min Online Survey and Compensation is $50
Alzheimer's, Dementia Caregivers United States GP_5495
60 min Phone Interview and Compensation is $125
Wilson's Disease Patients United States PICH_56565 min Online Survey and Compensation is $25 gift card
Alzheimer’s or Dementia Patients United States RICE_4251
15 min Online Survey and Compensation is $25
Vulvar HSIL Patients United States RTI_5017
30 min Online Survey and Compensation is $100
Glioblastoma Caregivers of patients ages 1-17 United States TIS_6016
60 min Web-Assisted Interview and Compensation is $100
Bladder Cancer Patients United States
60 min Web-Assisted Interview and Compensation is $100
Scleroderma Patients & Caregivers United States CLA_6055
60 min Web-Assisted Interview and Compensation is $100
Spina Bifida Patients and Caregivers United States M3_6079
60 min Web-Assisted Interview and Compensation is $100
Milk Allergy (not lactose intolerance)-HIV, Organ/Bone Marrow Transplants- Cancer treatment or taking a Cancer medication Patients United States QMMR_5201
60 min Phone Interview and Compensation is $100
Amyotrophic Lateral Sclerosis (ALS) Patients and Caregivers United States PICH_5650
5-10 min Online Survey and Compensation is $25
Alzheimer's Disease Patients United States PICH_5649
5-10 min Online Survey and Compensation is $25
Sickle Cell Disease Patients and Caregivers ages 12-17 United States IPS_558415 min Online Survey and Compensation is $25
Darier or Hailey-Hailey Disease Patients United States IQV_6103
30 min Web-Assisted Phone Interview and Compensation is $50
Diffuse Large B-Cell Lymphoma (DLBCL) United States IPS_6087
3-hour total- (2) 60-min Web-Assisted Phone Interviews plus 45-min Video Task and Compensation is $400
Alpha-1 Antitrypsin Deficiency associated liver disease (AATD LD) Patients, Caregivers and Patient advocates United States CH_6018
30 min Web-Assisted Phone Interview and Compensation is $50
United States Clinical Trials:
Restless Leg Syndrome United States IFMA_6307
24 week long Clinical Trial and Compensation will be discussed with those that are selected to participate
Hodgkins United States IFMA_5987
Clinical Trial and Compensation will be discussed with those that are selected to participate
Myelofibrosis United States IFMA_5929
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
United Kingdom
Spinal Muscular Atrophy (SMA) United Kingdom ZS_5866
60 min Web-Assisted Phone Interview – (Caregivers with their Patients) and Compensation is 75 GBP
Proteinuric Hypertensive Kidney Disease Patients United Kingdom ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 112 GBP
Alpha-1 Antitrypsin DeficiencyPatients United Kingdom CH_6018
Pyoderma Gangrenosum Patients United Kingdom LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 95 GBP
Canada
Polycystic Ovarian Syndrome (PCOS) Canada MARUM_6278
We are working to grow our PCOS panel for this future study
Spinal Muscular Atrophy (SMA) Canada ZS_5866
60 min Web-Assisted Phone Interview – (Caregivers with their Patients) and Compensation is 65 CAD
Liver Conditions - Autoimmune hepatitis (AIH) or HEP B or HEP or C NASH or NAFLD or Primary Sclerosing Cholangitis (PSC) Canada XYZ_6258
150 minutes online survey and daily diaries and Compensation is 330 CAD
Organ Transplant Patients Canada AV_5244
60 min Phone Interview and Compensation is 80 CAD
Proteinuric Hypertensive Kidney Disease Patients Canada ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 142 CAD
Germany
Type 1 & Type 2 Diabetes Patients Germany COM_6309
10 min Online Survey and Compensation is 100 Euros
Proteinuric Hypertensive Kidney Disease Patients Germany ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
Alpha-1 Antitrypsin Deficiency Patients Germany CH_6018
Pyoderma Gangrenosum Patients Germany LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 110 Euros
France
Proteinuric Hypertensive Kidney Disease Patients France ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
Alpha-1 Antitrypsin Deficiency Patients France CH_6018
Pyoderma Gangrenosum Patients France LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 110 Euros
Italy
Cardiomyopathy Patients Italy CHP_6076
60 min Web-Assisted Phone Interview and Compensation is 87 Euros
Proteinuric Hypertensive Kidney Disease Patients Italy ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 173 Euros
Pyoderma Gangrenosum Patients Italy LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 90 Euros
Spain
Proteinuric Hypertensive Kidney Disease Patients Spain ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
Pyoderma Gangrenosum Patients Spain LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 90 Euros
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?
You will earn $100 per hour for participating in 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. Since 2013, Rare Patient Voice has paid patients over $8 million dollars for participating in research studies.
