Assessment of the Educational Experiences for Patients Newly Diagnosed With Nephrotic Syndrome
Assessment of the Educational Experience for Patients With Newly Diagnosed Nephrotic Syndrome
Aperçu de l'étude
Statut
Les conditions
Description détaillée
The survey included questions addressing the following areas: 1.) Information that is important to know when learning to manage Nephrotic Syndrome. 2.) Preferred resources for the education of patients and caregivers with newly-diagnosed Nephrotic Syndrome. 3.) The time frame required to acquire confidence in the management of Nephrotic Syndrome. 4.) Disease-specific information such as diagnosis, length of disease duration, medications used, need for kidney biopsy, dialysis and/or transplant. 5.) Demographic data such as race/ethnicity and educational background.
The survey data is stored by the Rare Diseases Clinical Research Network's Data Management and Coordinating Center (DMCC) at the University of South Florida. The data is de-identified. Names or other personal health information were not collected. Upon conclusion of the study period, the data will be sent to the NEPTUNE consortium lead at the University of Michigan.
Type d'étude
Inscription (Réel)
Contacts et emplacements
Lieux d'étude
-
-
Florida
-
Tampa, Florida, États-Unis, 33612
- University of South Florida Data Management and Coordinating Center
-
-
Critères de participation
Critère d'éligibilité
Âges éligibles pour étudier
Accepte les volontaires sains
Sexes éligibles pour l'étude
Méthode d'échantillonnage
Population étudiée
Patients and caregivers were recruited from the Nephrotic Syndrome Study Network (NEPTUNE) Patient Contact Registry. Over 1000 patients and caregivers are members of the registry and have already provided permission to be contacted for future research studies. The Contact Registry was created to inform patients and/or parents of patients with Nephrotic Syndrome of clinical research studies.
Health professionals, including pediatric and internal medicine nephrologists and nephrology nurses will be recruited from the 18 NEPTUNE study network sites.
La description
Inclusion Criteria:
Patient and Patient Caregiver:
- 18 years or older
- English literate
- History of Nephrotic Syndrome > 3 months or caregiver of a child diagnosed with Nephrotic Syndrome > 3 months prior to enrollment
- Informed Consent
Healthcare Worker Inclusion Criteria:
- Age > 18 years
- English literate
- Provides medical care for children or adults with Nephrotic Syndrome
- Informed Consent
Exclusion Criteria:
- Inability to provide informed consent and complete survey
- Other criteria as specified by Consortium and based on the data we collect in the Contact Registry
Plan d'étude
Comment l'étude est-elle conçue ?
Détails de conception
Cohortes et interventions
Groupe / Cohorte |
|---|
|
NEPTUNE contact registry patients
Patients and caregivers will be recruited from the Nephrotic Syndrome Study Network (NEPTUNE) Patient Contact Registry.
Over 1000 patients and caregivers are members of the registry and have already provided permission to be contacted for future research studies.
Analysis of the one-time online questionnaire will be done in collaboration with investigators from the NEPTUNE Consortium.
|
Que mesure l'étude ?
Principaux critères de jugement
Mesure des résultats |
Description de la mesure |
Délai |
|---|---|---|
|
Stakeholder perspectives about educational experiences of newly-diagnosed Nephrotic Syndrome patients
Délai: 1 year after the study is closed to enrollment
|
The outcome measure(s) will be evaluated based on the cross-sectional online questionnaire.
The questionnaire is the only study procedure for this online patient contact registry protocol and will be the sole analysis tool for both the primary and secondary outcome measures.
|
1 year after the study is closed to enrollment
|
Mesures de résultats secondaires
Mesure des résultats |
Description de la mesure |
Délai |
|---|---|---|
|
Perspectives of patients/families with healthcare workers regarding educational needs of newly-diagnosed Nephrotic Syndrome
Délai: 1 year after the study is closed to enrollment
|
The outcome measure(s) will be evaluated based on the cross-sectional online questionnaire.
The questionnaire is the only study procedure for this online patient contact registry protocol and will be the sole analysis tool for both the primary and secondary outcome measures.
|
1 year after the study is closed to enrollment
|
Collaborateurs et enquêteurs
Parrainer
Les enquêteurs
- Chaise d'étude: Marie Tanzer, MD, Maine Medical Partners
- Chaise d'étude: Debbie Gipson, MD, C.S. Mott Children's Hospital
Dates d'enregistrement des études
Dates principales de l'étude
Début de l'étude
Achèvement primaire (Réel)
Achèvement de l'étude (Réel)
Dates d'inscription aux études
Première soumission
Première soumission répondant aux critères de contrôle qualité
Première publication (Estimation)
Mises à jour des dossiers d'étude
Dernière mise à jour publiée (Estimation)
Dernière mise à jour soumise répondant aux critères de contrôle qualité
Dernière vérification
Plus d'information
Termes liés à cette étude
Termes MeSH pertinents supplémentaires
Autres numéros d'identification d'étude
- 6802
Ces informations ont été extraites directement du site Web clinicaltrials.gov sans aucune modification. Si vous avez des demandes de modification, de suppression ou de mise à jour des détails de votre étude, veuillez contacter register@clinicaltrials.gov. Dès qu'un changement est mis en œuvre sur clinicaltrials.gov, il sera également mis à jour automatiquement sur notre site Web .