Assessment of the Educational Experiences for Patients Newly Diagnosed With Nephrotic Syndrome
Assessment of the Educational Experience for Patients With Newly Diagnosed Nephrotic Syndrome
Studieöversikt
Status
Betingelser
Detaljerad beskrivning
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.
Studietyp
Inskrivning (Faktisk)
Kontakter och platser
Studieorter
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Florida
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Tampa, Florida, Förenta staterna, 33612
- University of South Florida Data Management and Coordinating Center
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Deltagandekriterier
Urvalskriterier
Åldrar som är berättigade till studier
Tar emot friska volontärer
Kön som är behöriga för studier
Testmetod
Studera befolkning
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.
Beskrivning
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
Studieplan
Hur är studien utformad?
Designdetaljer
Kohorter och interventioner
Grupp / Kohort |
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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.
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Vad mäter studien?
Primära resultatmått
Resultatmått |
Åtgärdsbeskrivning |
Tidsram |
|---|---|---|
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Stakeholder perspectives about educational experiences of newly-diagnosed Nephrotic Syndrome patients
Tidsram: 1 year after the study is closed to enrollment
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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.
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1 year after the study is closed to enrollment
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Sekundära resultatmått
Resultatmått |
Åtgärdsbeskrivning |
Tidsram |
|---|---|---|
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Perspectives of patients/families with healthcare workers regarding educational needs of newly-diagnosed Nephrotic Syndrome
Tidsram: 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.
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1 year after the study is closed to enrollment
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Samarbetspartners och utredare
Sponsor
Utredare
- Studiestol: Marie Tanzer, MD, Maine Medical Partners
- Studiestol: Debbie Gipson, MD, C.S. Mott Children's Hospital
Studieavstämningsdatum
Studera stora datum
Studiestart
Primärt slutförande (Faktisk)
Avslutad studie (Faktisk)
Studieregistreringsdatum
Först inskickad
Först inskickad som uppfyllde QC-kriterierna
Första postat (Uppskatta)
Uppdateringar av studier
Senaste uppdatering publicerad (Uppskatta)
Senaste inskickade uppdateringen som uppfyllde QC-kriterierna
Senast verifierad
Mer information
Termer relaterade till denna studie
Ytterligare relevanta MeSH-villkor
Andra studie-ID-nummer
- 6802
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