What's New at Rare Patient Voice?
Recently, Rare Patient Voice partnered with MediFind, an advanced digital health platform helping people facing complex health challenges find care, and surveyed 1,229 members of the RPV community on the current journey to diagnosis and care. The resulting report, "The Long and Winding Road to Care'' which can be downloaded here, shows progress being made for patients, but unevenly across disease types and other demographics. Key takeaways include:
The diagnostic journey continues to vary
- Patients with rare diseases took longer to be correctly diagnosed: only 23% were diagnosed within three months, while it took five or more years for 28% of patients. For patients with cancer, two-thirds were diagnosed within three months, and only 1% took five or more years to be properly diagnosed.
- On average, patients report seeing four different doctors before getting correctly diagnosed. This number jumps to almost six different doctors when the patient has a rare disease.
Genetic testing is shortening time-to-diagnosis, but progress is uneven
- Genetic testing has become particularly prevalent for patients with cancer as 75% of patients diagnosed with cancer over the last two years have been genetically tested.
- Surprisingly, genetic testing is not a mainstay of rare disease diagnosis, with only 20% of patients diagnosed with a rare disease in the past two years reporting that they received genetic testing.
Clinical expertise drives specialist choice
- 55% of rare disease patients say clinical expertise is the most important factor when choosing their doctor, as opposed to 47% of complex disease patients.
- 88% of primary care doctors say medical skill is of great importance when selecting to whom they will refer patients, although how doctors practically evaluate such skill remains unclear.
Record a Video, Receive Rarity!
Help us spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As a 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.
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!
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
New on the Bookshelf
LUNGevity Foundation is the nation’s leading lung cancer organization focused on improving outcomes for people with lung cancer through research, education, policy initiatives, and support and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live longer and better lives.
One of the foundation’s activities to amplify the patient voice is project PEER: Understanding the lung cancer Patient ExperiEnce in the Real-world setting. PEER is an international study, open to any adult participant with lung cancer or caregiver who can read and respond to questions in English. Individuals must be 18 years of age or older and can access and use a device with a web browser that connects to the internet.
Via online surveys, we ask questions about your background, overall health, lung cancer diagnosis, treatment history, treatment satisfaction, physical well-being, and emotional quality of life. You would be asked to complete, at sign up, an initial longer survey (30-40 minutes) and then short (7-12 minute) monthly surveys for one year. You will be compensated for your time.
Why does Project PEER want my data?
Patient-reported data is a powerful source of real-world data. It can complement clinician-reported data and electronic health records data to identify treatment patterns. This is important because
- Only 3%-5% patients participate in clinical trials, so reliance on clinical trials as the only source of patient experience is incomplete
- Clinical trials exclude real-world patients with brain metastasis, prior cancers, and poor performance status
- Patients in the real world undergo treatment based on non-clinical factors such as access and availability
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 have hundreds of 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 firstname.lastname@example.org.
- 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!
Bladder Cancer – Non Muscle Invasive Bladder Cancer patients and caregivers United States AFS_6548 60-min web-assisted phone interview compensation is $175
Spinal Muscular Atrophy patients United States ZS_6227 60-min web-assisted phone interview compensation is $100
Alzheimer’s Disease or Dementia - patients and caregivers living in Philadelphia, PA or Evanston, IL United States DS_6542 In-person interviews consisting of solo patient, solo caregiver, and/or combined patient and caregiver sessions. Participants will be paid, the Project Manager has payment details.
Autosomal Dominant Polycystic Kidney Disease (ADPKD) patients United States IPS_6513 Multiple phases in the study that consist of web-assisted phone interviews, compensation is based on participation and is up to $1205
Urinary Tract Infection (UTI) patients United States PHARV_6554 60-min web-assisted phone interview compensation is $100
Non-Small Cell Lung Cancer - male patients United States IPS_6519 60-min web-assisted phone interview compensation is $100
Breast Cancer patients United States ZS_6522 60-min online forum compensation is $100
We are looking for patients from the Chicago area that are on the following Medications: Aimovig, Repatha, or Enbrel United States FW_6520 60-min in-person study compensation is $150
Non Small Cell Lung Cancer (NSCLC) patient United States LAG_6511 60 min web-cam interview compensation is $200
Hepatitis B patients and caregivers United States INV_6525 20-min online survey (to be taken from a phone as there is a portion that includes voice response) compensation is $35
Hemophilia B patients United States PUT_6420 20-min online survey compensation is $35
Non Small Cell Lung Cancer (NSCLC) patients United States LAG_6511 60-min webcam interview (plus homework) compensation is $200
Chronic Heart Failure & Congestive Heart Failure caregivers of patients that are age 1-17 years United States XYZ_6526 60-min web-assisted phone interview compensation is $100
Clinically Isolated Syndrome (CIS), or Relapse-Remitting (RRMS), or Secondary Progressive MS (SPMS) patients United States DYN_6440 35-min online survey compensation is $60
WHIM Syndrome patients and caregivers United States RMR_6517 60-min web assisted phone interview compensation is $100
Paroxysmal Nocturnal Hemoglobinuria patients and caregivers United States TRI_6197 60-min web assisted phone interview compensation is $100
Sjogren's Syndrome patients United States KPD_6441 40-min online survey compensation is $85
Ankylosing Spondylitis - Male Patients United States GP_6502 45-min web assisted phone interview (physician confirmation of diagnosis is required in order qualify and to be paid) compensation is $135
Multiple Myeloma patients United States GP_6473 90-min web assisted phone interview (or two 45 min interviews if the patient prefers) compensation is $210
Psoriasis patients United States GP_6305 30-min online survey compensation is $50
Glioblastoma patients/caregiver pairs United States ELR_6454 60 min joint web-assisted phone interview, plus 2-3 pre-work activities and the compensation is $600 for a patient/caregiver pair ($500 for the patient, $100 for the caregiver as the caregiver is meant to assist the patient for the interview and activities).
Psoriasis or Psoriatic Arthritis patients United States HOR_6504 90-min web-assisted phone interview and the compensation is $225
Non-Hodgkin Lymphoma Patients with Caregivers United States WORK_6478 10-min online survey, plus 30-min pre-call phone interview, plus 60-minute web-assisted phone interview (up to 6 sessions of the interview) and the compensation is $20 survey, $50 Pre-call, $100 per session of the web-assisted phone interview
Hemophilia A study for Patients and Caregivers living in Dallas, LA, or Chicago United States SCH_6385 In-person Interview (length and compensated vary)
Burkitt Lymphoma or B-Cell Lymphoma Patients United States RP_6484 2 min survey no reward
Parkinson's Disease Patients United States PDIE_6401 60-min web-assisted phone interview compensation is $100
Diffuse Large B-Cell Lymphoma (DLBCL) Patients and Caregivers United States CHP_6501 60-min web-assisted phone interview compensation is $100
Eosinophilic Esophagitis (EoE) - male patients United States TRI_6405 60-min web-assisted phone interview compensation is $100
Multiple Sclerosis relapsing-remitting patients United States KPD_6396 30 min online survey and compensation is $50
Psoriatic Arthritis or Hidradenitis Suppurativa caregivers United States BV_6402 60-min web-assisted phone interview and the compensation is $125
High Blood Pressure male patients United States GP_6043_W2 If chosen for the study, the length of time commitment is 30-mins for an online survey and the compensation is $50 + $25 COD (if chosen)
Myasthenia Gravis patients United States HEU_6410 30-min online survey and compensation is $50
Colorectal, Colon, Bowel or Rectal Cancer patients United States GP_6409 60-min web-assisted phone interview and the compensation is $150
Hemophilia Patients and Caregivers United States REAC_6423 5-min online survey with no compensation for the survey (some participants may be selected for an in person study
Bronchiectasis patients United States MP_6398 60-min and compensation is $100
Neuromyelitis optica spectrum disorder (NMOSD) and NMO Patients United States ZS_6399 10 min Online Survey and Compensation is $40
Thyroid Eye Disease (TED) MALE Patients United States 21G_6335 Year-long study (consists of 4 web-assisted phone interviews), payment upon completion of tasks
Multiple Myeloma Patients and Caregivers ZS_6399 25-min Online Survey and Compensation is $45
Chronic Kidney Disease (CKD) Patients United States 35 min Online Survey and Compensation is $45
Rheumatoid Arthritis, Psoriatic Arthritis, or Ankylosing Spondylitis Patients United States EVR_6306 15 min Online Survey and Compensation is $20
End Stage Renal Disease Patients United States OSG_6206 60 min Zoom Interview and Compensation is $100
Myotonic Muscular Dystrophy Patients and Caregivers United States MP_6339 60 min Web-Assisted Phone Interview and Compensation is $100
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
Uterine Fibroids United States IPS_6179 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
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
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis Patients United States PHO_2397 30 min Online Survey and Compensation is $50
Wilson's Disease Patients United States PICH_5656 5 min Online Survey and Compensation is $25 gift card
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
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
United States Clinical Trials:
Respiratory Syncytial Virus (RSV) patientsUnited States IFMA_6453 The total length of participation in this clinical trial is approximately 2 years (25 months). It includes up to 8 trial visits and 26 brief communications (via telephone, email, or text message) participants will be compensated for their time
Restless Leg Syndrome United States IFMA_6307 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.
Organ Transplant, Blood Cancer, or Cytomegalovirus (CMV) patients and caregivers Canada HUM_6445 90-min web-assisted phone interview (plus a 30-min homework assignment) compensation is 220 CAD
Colorectal, Colon, Bowel or Rectal Cancer patients Canada GP_6409 60-min web-assisted phone interview and the compensation is 190 CAD
Organ Transplant Patients Canada AV_5244 60 min Phone Interview and Compensation is 80 CAD
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. RPV has paid patients over $8 million dollars since 2013 for participating in research studies.