Last reviewed · How we verify
NCT04920110: Rett-ORCA
Development of the ORCA Communication Measure for Rett Syndrome
trial in Rett Syndrome in 272 participants. Completed in 10 February 2022.
10 February 2022
Quick facts
| Lead sponsor | Rett Syndrome Research Trust |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 272 |
| Start date | 2 July 2021 |
| Primary completion | 10 February 2022 |
| Estimated completion | 10 February 2022 |
| Sites | 1 location across United States |
Conditions studied
- Rett Syndrome — all drugs for Rett Syndrome →
Sponsor
Rett Syndrome Research Trust
Who can join
18 and older, any sex, with Rett Syndrome. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
This measurement validation study will use qualitative and quantitative methodology to evaluate the Observer-Reported Communication Ability Measure (ORCA), to appropriately capture communication abilities in individuals with Rett syndrome. The ORCA Measure is a caregiver-reported questionnaire that collects caregiver observations of their child's communication abilities including expressive, receptive and pragmatic communication types. Caregivers will participate via phone interviews and online surveys. Approximately 270 participants will be enrolled.
Publications & conference data
1 peer-reviewed publication reference this trial (live from Europe PMC):
-
Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review.
Saldaris JM, Ayalde J, Kankanange S, Keeley J, et al · · 2024 · cited 2× · PMID 39141588 · DOI 10.1111/1460-6984.13100
Verify or expand the search:
- PubMed search for NCT04920110
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other recruiting trials for Rett Syndrome
Currently open trials in the same condition.
- NCT06840496 — To Investigate the Efficacy of Treatment With Oral NA-921 (Bionetide) Versus Placebo in Females With Rett Syndrome · Phase 3 · recruiting
- NCT07151950 — Obi Medical Robot: Evaluating Effectiveness Related to Usability · active not recruiting
- NCT06856759 — Single-Dose AAV-MECP2 Safety/Tolerability and Efficacy in Rett Syndrome · EARLY_PHASE1 · recruiting
- NCT07418905 — Technology-supported Motor Rehabilitation for People With Rett Syndrome · NA · active not recruiting
- NCT06152237 — Safety and Efficacy of TSHA-102 in Pediatric Females With Rett Syndrome (REVEAL Pediatric Study) · Phase 1, PHASE2 · active not recruiting
Other Rett Syndrome Research Trust trials
Trials by the same sponsor.
- NCT04900493 — The Rett Syndrome Global Registry · recruiting
- NCT04514549 — ASSESSING EMERALD AND MC10 BIOSTAMP nPOINT BIOSENSORS FOR RETT SYNDROME · completed
- NCT03633058 — A Study to Evaluate Ketamine for the Treatment of Rett Syndrome · Phase 2 · completed
Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT04920110 (US National Library of Medicine, public domain)
- Publications: Europe PMC API search by NCT ID, retrieved 10 June 2026
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by Rett Syndrome Research Trust
- Last refreshed: 22 April 2022
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT04920110.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing