Last reviewed · How we verify
NCT04128943: ePRO-AA-PNH
Electronic Patient-reported Outcome Monitoring in Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria
trial testing symptom questionnaire in Aplastic Anemia in 9 participants. Completed in 6 July 2020.
6 July 2020
Quick facts
| Lead sponsor | University Hospital, Basel, Switzerland |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 9 |
| Start date | 1 November 2019 |
| Primary completion | 6 July 2020 |
| Estimated completion | 6 July 2020 |
| Sites | 1 location across Switzerland |
Drugs / interventions tested
- symptom questionnaire
- recording of vital signs
- European Organisation for Research and Treatment of Cancer (EORTC) quality of life questionnaire (QLQ)-C30 questionnaire
- interview
Conditions studied
- Aplastic Anemia — all drugs for Aplastic Anemia →
- Paroxysmal Nocturnal Hemoglobinuria — all drugs for Paroxysmal Nocturnal Hemoglobinuria →
Sponsor
University Hospital, Basel, Switzerland
Who can join
18 and older, any sex, with Aplastic Anemia or Paroxysmal Nocturnal Hemoglobinuria. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
Aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) are interrelated and very rare diseases. Therefore, little data about clinical characteristics, especially the variety of symptoms in the course of the respective disease are available. As a consequence, patients may be left on their own between infrequent follow-ups at a specialist center. A web-based symptom-monitoring application can support selfmanagement and patient empowerment and promotes a patient- centered interdisciplinary team approach in the context of a "disease management program". This pilot study is to investigate usability and feasibility of the electronic Patient-Reported Outcome (ePRO) application in AA/PNH by assessing recruitment, app utilization, data collection, functionality, acceptability after using and working with the ePRO application.
Publications & conference data
3 peer-reviewed publications reference this trial (live from Europe PMC):
-
Development of a patient-reported outcome questionnaire for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PRO-AA/PNH).
Weisshaar K, Ewald H, Halter J, Gerull S, et al · · 2020 · cited 11× · PMID 32943103 · DOI 10.1186/s13023-020-01532-3 -
Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH).
Bänziger S, Weisshaar K, Arokoski R, Gerull S, et al · · 2023 · cited 3× · PMID 36326854 · DOI 10.1007/s00277-022-05012-5 -
Feasibility of electronic patient-reported outcome monitoring with self-management advice and warning system in aplastic anemia and paroxysmal nocturnal hemoglobinuria – a pilot study (ePRO-AA-PNH)
Baenziger S, Weisshaar K, Arokoski R, Gerull S, et al · · 2021 · DOI 10.21203/rs.3.rs-337827/v1
Verify or expand the search:
- PubMed search for NCT04128943
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other recruiting trials for Aplastic Anemia
Currently open trials in the same condition.
- NCT07101770 — A Prediction Model in Pregnant Women With Aplastic Anemia · recruiting
- NCT06752694 — Ruxolitinib Based GVHD Prophylaxis Regimen Before, During, and After Hematopoietic Cell Transplantation in Older Adult P · Phase 2 · recruiting
- NCT06936930 — Reproductive and Mental Health of Patients With Aplastic Anemia · recruiting
- NCT06689800 — Let's Get REAL: Family Health Communication Tool in Pediatric Stem Cell Transplant and Cellular Therapy · NA · recruiting
- NCT06613880 — Standard Immunosuppressive Therapy Combined With Romiplostim N01 as First-line Treatment for Severe Aplastic Anemia · Phase 2 · recruiting
Other University Hospital, Basel, Switzerland trials
Trials by the same sponsor.
- NCT07444788 — Acute Effects of Intravenous 5-MeO-DMT in Healthy Participants · Phase 1 · recruiting
- NCT07494214 — Acute Analgesic Effects of MDMA on Experimentally Induced Acute Pain, Hyperalgesia and Allodynia in Healthy Participants · Phase 1 · recruiting
- NCT07419048 — Artificial Intelligence or Human Hand? Evaluating Inferior Vena Cava Imaging for Hydration Status · recruiting
- NCT06978777 — Effect of Caffeine on Cold-stimulated Brown Adipose Tissue Activity · NA · recruiting
- NCT07273630 — Effect of Protein Supplementation and Fluid Restriction on Plasma Sodium Levels in Patients Undergoing Pituitary Surgery · NA · recruiting
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 NCT04128943 (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 University Hospital, Basel, Switzerland
- Last refreshed: 5 October 2020
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/NCT04128943.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing