Chronic Illness and Disability Research / Survey Opportunities

	B	C	D	E	F	G	H	I	J	K	L	M
1
2	***Thank you for your interest in posting your chronic illness research opportunities here and for being a part of research involving those with chronic illness. This spreadsheet is available as a means for sharing information about research studies that the Center for Chronic Illness is notiifed about. Please note, the Center for Chronic Illness is not affiliated with any of these research studies and is only serving in a role of sharing information in this circumstance. Should you have questions about any of the studies listed here, please contact the individual in charge of the speciifc study. For institutions and individuals listing your studies here, please note this list is not regularly monitored, and we request that you revisit the spreadsheet to remove your study once the study is no longer active. Thank you!
3
4
5	STUDY NAME	DATE POSTED	END DATE	INSTITUTION	STUDY DETAILS	ELIGIBILITY	REWARD / COMPENSATION?	WEBSITE	LINK TO FLIER	CONTACT NAME	PHONE / EMAIL CONTACT	ADDITIONAL DETAILS
6	spiriTED Thyroid Eye Disease Study	6/5/24	-	Tourmaline Bio	Phase 2b trial of TOUR006 in Thyroid Eye Disease (TED) to evaluate 20mg and 50mg doses against placebo given by a subcutaneous injection every eight weeks to TED patients who are in the active inflammatory phase of disease.	- Diagnosis of Graves’ Disease - Ages 18+ - Moderate-severe symptoms of TED in the past 12 months	Participants will receive all study-related procedures at no cost. You may be eligible for reasonable compensation for your time to attend study visits. You may also be reimbursed for certain approved study-related costs, such as transportation, lodging, and meals.	lpcur.com/SpiriTEDStudy	Flyer	Maggie McGrath	maggie@leapcure.com
7	Teprotumumab Thyroid Eye Disease Study	6/5/24	-	Amgen	A Phase 3, Randomized, Double-masked, Placebo-controlled, Parallel-group, Multicenter Trial to Evaluate the Efficacy, Safety and Tolerability of Subcutaneous Teprotumumab in Participants With Moderate-to-Severe Active Thyroid Eye Disease	- Diagnosis of Graves’ disease - Begun experiencing TED symptoms in the past 14 months - No prior teprotumumab use	The study drug and study procedures required by the study plan will be provided at no cost. Your nearby site can also share more information about having costs related to travel and accommodations covered as well.	lpcur.com/TEDStudy9	Flyer	Maggie McGrath	maggie@leapcure.com
8	Microsoft Research Study into Video Calls with a Chronic Illness	8/7/24	9/1/24	Microsoft Research	A survey study followed by focus groups exploring people's experiences video calling with a chronic illness. Firstly, the survey study explores people's varying experiences and challenges video calling with a chronic illness. Secondly, the focus groups consider AI / design video calling solutions to support people's varying needs.	- You are 18 years of age or older - Reside in the United States - You live with a chronic illness - You have experienced participating in video calls or online group meetings	The survey has no rewards or benefits. If you express interest in the focus groups within your surey response and are selected -- you will be compensated at a rate of $50 per hour of participation through vouchers.	https://forms.office.com/r/up6DGVwv6j	https://microsoft-my.sharepoint.com/:b:/p/t-hcurtis/Ee7aEMbAFUdLmgxnO2-3HRsBIGXv1328PAtuor0qHJlOQg?e=pw7mMT	Humphrey Curtis	t-hcurtis@microsoft.com	Link to survey is provided in the website column. For more about the MSR Ability team: https://www.microsoft.com/en-us/research/group/ability/?msockid=1a47b19f95aa68360e01a505946d6969
9	SatraGO Thyroid Eye Disease Study	8/21/24		Genentech	A Phase III, Randomized, Double-Masked, Placebo-Controlled, Multicenter Study To Evaluate The Efficacy, Safety, Pharmacokinetics, And Pharmacodynamics Of Satralizumab In Participants With Moderate-To-Severe Thyroid Eye Disease	- 18 years old and above - Diagnosis of TED within the past year	The study drug and study procedures required by the study plan will be provided at no cost. Your nearby site can also share more information about having costs related to travel and accommodations covered as well.	lpcur.com/TEDResearchStudy	FAQ Sheet	Maggie McGrath	maggie@leapcure.com
10	AP Research Project (Calabasas High School Student)	1/28/25	2/15/25	Student research	The research study works to explore the impact of being an adolescent (13-young adult) living with someone who has a chronic ilness. Further, I seek to research how being a young adult and having a family member who has a chronic ilness can impact family dyanmics and the social, psycological, and financial impact in families. This study will be a 5-10 minute zoom interview to ask a few questions as to how this impacts one's family.	- Ages 13-young adult; has a immediate family member who has a long-term ilness (cancer, alzeihmers, etc).	Everyone who completes the interview will be entered for a $50 gift card.	https://docs.google.com/forms/d/e/1FAIpQLSdZ54Xqx1-zq245_GxYEQ7Y6T2geJxyUgomXKtjvN6aKt0nEw/viewform?usp=header		Levie Turobiner	levieturob7708@student.lvusd.org
11	What Makes a Quality Life?: How Measures Can Better Capture Quality of Life Amongst Disabled Participants	1/29/25	2/26	Fordham University	This project aims to develop and test a new quality of life (QOL) measure for disabled individuals, incorporating current literature, existing measures, and participant insights. To participate, you must be 18 or older have a disability and be located in the United States. As compensation for your participation you will recieve a $5 gift card	- 18 years or older; located in the United States, and has a disability	Every participant who inputs their email address at the end of the survey will recieve a $5 gift card	https://fordham.co1.qualtrics.com/jfe/form/SV_dhamrR1kZZS2rWe	Flyer	Piper Smith	psmith89@fordham.edu
12	A Mixed Methods Study of the Transition to Adult Healthcare for Sexual Minority Young Adults with Chronic Pain	1/31/25		West Virginia University	This research aims to explore the experiences of sexual minority young adults with chronic pain in the healthcare system. You would complete surveys online one time to participate in this study. You may be asked to complete a confidential interview on Zoom with a study team member if you are interested. Participation is voluntary and there are no costs to you to participate. You will receive a $15 electronic gift card for completing the surveys. If you complete the interview, you will receive a $20 electronic gift card.	-18-24 years old; has chronic pain; located in the United States; sexual orientation other than heterosexual
13	Transcranial Ultrasound Stimulation for Chronic Pain Feasibility study	05/05/2025	05/05/2026	Nudge	Study Purpose: We are studying how transcranial ultrasound stimulation (TUS) affects brain activity in chronic pain using magnetic resonance imaging (MRI). Please note this is not a treatment study. The information we collect will help us develop better research tools and advance our understanding of chronic pain mechanisms. Study Description: During the study, you'll receive targeted sound waves to specific brain regions while in an MRI scanner. The study involves up to 5 visits lasting 1-2 hours each. You will also complete daily questionnaires in between visits.	- 18-65 - has chronic pain (any etiology) - located in San Francisco, California - no metal objects in body	$100 per session. Max $400 for study.	https://www.nudge.com/studies/		Amelia Lubelska	amelia@nudge.com
14	INSPIRE-Flare	17/04/2025	17/06/2025	University of Cambridge	This study explores patient experiences of flares in autoimmune diseases. Participants will fill out a survey which asks about how they define flares, the things that trigger flares and the progression of symptoms in flares. The survey has been designed by a team of researchers, patients and clinicians and takes approximately 45 minutes to complete. It can be accessed here: https://bit.ly/4kOQeyg	18 years or older Diagnosed with an autoimmune disease	Participants will be given the opportunity to enter a prize draw to win one of four £50 (or equivalent) Amazon vouchers when the survey closes in mid-June.	https://bit.ly/4kOQeyg	Participant Information Sheet	Martha Piper or Melanie Sloan	mp2196@cam.ac.uk or mas229@medschl.cam.ac.uk
15	Constructing the Harm Model for People with Disability in Social VR	16/06/2025	-	Virginia Tech	We are conducting research to understand the harassment experience for people with disabilities in social VR. Participants will complete an online survey reflecting on their harassment experiences in social VR. The survey will take approximately 30-60 minutes to complete. As a token of appreciation, participants will receive a $10 compensation upon completing the survey. Compensation will be provided after your response is validated, and we will contact you with further details. This study is fully remote, and you can complete it at your convenience.	- Be at least 18 years old; - Have a disability, including but not limited to visual impairments, deaf and hard of hearing, motor disabilities, intellectual disabilities, autism, etc; - Have used social VR applications.	We offer $10 compensation after completing the survey	https://uwmadison.co1.qualtrics.com/jfe/form/SV_aY4PCc7pN7jtq3Y	Flyer	Adeline Li	adelineli@vt.edu
16	Financial Wellness of People with Rare Diseases, Chronic Illness and Disabilities	6/17/25	6/22/25	National Disability Institute	NDI is conducting research to determine what topics will be the subject of two fall webinars dealing with financial empowerment.	Have a rare disease, chronic illness and/or disability.	Survey closes 6/22/25.	https://ndiinc.formstack.com/forms/financial_wellness_survey		Becky MacDicken	bmacdicken@ndi-inc.org	Thank you for your interest in the survey and webinars that National Disability Institute (NDI) will be offering to share financial resources with individuals with disabilities and late onset diagnosis patients. NDI is the first national organization committed exclusively to championing economic empowerment, financial education, asset development and financial stability for all persons with disabilities for the past 20 years. We will be developing two educational webinars to help strengthen the financial resilience of individuals with chronic illness and/or disabilities. The goal of these webinars will be to offer information and resources to help address knowledge gaps that might prevent patients from achieving financial stability. The information and resources shared in these webinars will be determined based on data we hope to gather from individuals via the survey link below. We would like to ask for your support by sending this survey to your patients so that we can better understand what financial challenges they have experienced since the onset of serious health issues and what financial resources could help to strengthen their financial well-being.
17	Culturally and Linguistically-Specific Pain Expression Library Database	6/17		University of Wisconsin-Madison	This study aims to improve Asian representation within the chronic pain sector of the American healthcare system. This study uses qualitative methods of interviewing patients with a stipend of $50 to discuss their experiences with chronic pain, community, healthcare, etc. The interview will be approximately 60 minutes through a zoom meeting and will be recorded for transcription and database reasons. The stipend will be received by the participant after the interview through email as a form of an Amazon giftcard. The study is fully remote and the google form to fill out can be accessed here: https://forms.gle/STkKdMQXq1hMGcGXA	- At least 18 years old - Have chronic illness/pain (can include migraines, bad period cramps, etc) - Be of East Asian descent - Be able to speak the language of their cultural background (level does not matter)	$50 Amazon giftcard sent through gmail provided by participant	https://forms.gle/STkKdMQXq1hMGcGXA	Will be put up soon	Cassie Yu	cyu323@wisc.edu
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
35
36
37
38
39
40
41
42
43
44
45
46
47
48
49
50
51
52
53
54
55
56
57
58
59
60
61
62
63
64
65
66
67
68
69
70
71
72
73
74
75
76
77
78
79
80
81
82
83
84
85
86
87
88
89
90
91
92
93
94
95
96
97
98
99
100