NCT07454733Toboroz
Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers?
Comparing the Impact of Video Integration to Traditional Amyotrophic Lateral Sclerosis Visit Communication on Patient and Caregiver Quality of Life
Forrás: ClinicalTrials.gov · Utoljára frissítve: 2026. okt. 8.
Rövid összefoglaló (regiszter, angolul)
Amyotrophic lateral sclerosis (ALS) is a fatal, rare neurodegenerative disease affecting 30,000 people in the United States. The gold standard of care for people with ALS is multidisciplinary clinics (MDC). In these multidisciplinary clinics, which occur every 3 to 4 months, people with ALS see up to 12 different healthcare providers (e.g., speech therapy, physical therapy, the ALS doctor). These clinics can last from three to five hours, and across these three to five hours people with ALS and their caregivers receive a lot of information that is critical to the care and quality of life for people with ALS. However, this information can be difficult to remember given the large amount of information that is conveyed. The current standard for providing take-home information about the visit is to provide patients with a written after-visit summary and access to their doctor's notes about the visit, typically through the patient portal. This study tests whether providing participants with video recordings of their MDC visits improves their quality of life and the quality of life of their caregivers. The study will enroll 400 pairs of people with ALS and their caregivers from eight different sites in the United States. Half of the participants in the study will receive their after-visit summary notes (the NOTES condition) and the other half of the participants will receive both their summary notes, but will also receive video recordings of their MDC visits that they can watch on their own at home (the VIDEO condition). The study will last for 12 months, with participants receiving NOTES or VIDEO at each of their regularly-scheduled MDCs during the 12 months. The study will test whether caregiver and patient participants in the VIDEO condition experience better quality of life than those in the NOTES condition at 1 month, 6 months, and 12 months from study enrollment. The results of this study will help determine what is the most effective approach to communicating MDC information to people with ALS and their caregivers.
- Állapot (regiszter)
- Toboroz
- Vizsgálattípus
- Beavatkozással járó
- Résztvevők száma
- 800 (tervezett)
- Első benyújtás
- 2026. febr. 25.
- Kezdés
- 2026. aug. 12.
- Elsődleges befejezés
- 2029. szept. 1.
- Fő szponzor
- Trustees of Dartmouth College
- Betegségek
- Amiotrófiás laterálszklerózis (ALS)
- NCT-szám
- NCT07454733
Mit vállalsz
- Vizsgálat típusa: Beavatkozással járó
- Tervezett résztvevők: 800
- 2026. aug. 12. és az elsődleges befejezés (2029. szept. 1.) között
- 7 helyszín, 1 országban
- Vizitek és vizsgálatok: kérdezd a vizsgálat csapatát, a regiszter nem sorolja fel őket
A(z) ClinicalTrials.gov regisztermezőiből összeállítva. A vizsgálat felépítését írja le.
Ki nem vehet részt
Szó szerint a(z) ClinicalTrials.gov forrásból, témák szerint csoportosítva. Hogy ki vehet részt, azt csak a vizsgálat csapata dönti el.
Más betegség
- Significant cognitive impairment, clinical dementia, or unstable psychiatric illness (including, but not limited to, psychosis, active suicidal ideation, suicide attempt, or untreated major depression) as determined by the site investigator
- Uncorrected hearing or visual impairment that would impair the ability to view video recordings;
- Uncorrected hearing or visual impairment;
Egyéb
- Unable or unwilling to provide informed consent or follow study procedures
- Current pregnancy based on participant self-report;
- Unable to access the internet;
- Do not have access to a personal or shared email and are not interested in creating a personal or shared email;
- Do not wish to create a patient portal account, if they do not already have one;
- Incarcerated.
- Unable or unwilling to provide consent or follow study procedures;
- Unable to access the internet;
- Do not have access to a personal or shared email and are not interested in creating a personal or shared email;
- Professional caregiver for the patient;
- Incarcerated.
Kiket keres a vizsgálat
- Diagnosis of ALS by either El- Escorial or Gold Coast Criteria
- ≥18 years of age
- Plan to attend MDC visits for 12 months
- Speak English or Spanish
- Presence of a caregiver (defined as someone who assists with care) who is also participating in the VITALS trial
- Projected life expectancy of at least 12 months as determined by the site investigator.
- Agree to their identified role as a caregiver of a patient with ALS participating in the VITALS trial;
- Speak English or Spanish;
- ≥18 years of age.
Életkor a regiszterben: 18 év – - · Nem: nők és férfiak · Egészséges önkénteseket nem fogad
Helyszínek (7)
Helyszínek a regiszter sorrendjében. Ha a profilodba mented a városodat, távolság szerint rendeződnek.
| Helyszín | Város | Ország | Helyszín állapota |
|---|---|---|---|
| Massachusetts General Hospital | Boston | Egyesült Államok | Toborzás még nem indult |
| Penn State Health Milton S. Hersey Medical Center | Hershey | Egyesült Államok | Toborzás még nem indult |
| Mayo Clinic- Jacksonville | Jacksonville | Egyesült Államok | Toborzás még nem indult |
| Dartmouth-Hitchcock Health | Lebanon | Egyesült Államok | Toboroz |
| University of Wisconsin Health | Madison | Egyesült Államok | Toborzás még nem indult |
| University of Pittsburgh Medical Center | Pittsburgh | Egyesült Államok | Toborzás még nem indult |
| Mayo Clinic Scottsdale | Scottsdale | Egyesült Államok | Toborzás még nem indult |
Ez az oldal tájékoztatás, nem orvosi tanács. Bármely vizsgálatról az orvosoddal beszélj.