Assessment of the Educational Experiences for Patients Newly Diagnosed With Nephrotic Syndrome
Assessment of the Educational Experience for Patients With Newly Diagnosed Nephrotic Syndrome
Visão geral do estudo
Status
Condições
Descrição detalhada
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.
Tipo de estudo
Inscrição (Real)
Contactos e Locais
Locais de estudo
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Florida
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Tampa, Florida, Estados Unidos, 33612
- University of South Florida Data Management and Coordinating Center
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Critérios de participação
Critérios de elegibilidade
Idades elegíveis para estudo
Aceita Voluntários Saudáveis
Gêneros Elegíveis para o Estudo
Método de amostragem
População do estudo
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.
Descrição
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
Plano de estudo
Como o estudo é projetado?
Detalhes do projeto
Coortes e Intervenções
Grupo / Coorte |
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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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O que o estudo está medindo?
Medidas de resultados primários
Medida de resultado |
Descrição da medida |
Prazo |
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Stakeholder perspectives about educational experiences of newly-diagnosed Nephrotic Syndrome patients
Prazo: 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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Medidas de resultados secundários
Medida de resultado |
Descrição da medida |
Prazo |
|---|---|---|
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Perspectives of patients/families with healthcare workers regarding educational needs of newly-diagnosed Nephrotic Syndrome
Prazo: 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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Colaboradores e Investigadores
Patrocinador
Investigadores
- Cadeira de estudo: Marie Tanzer, MD, Maine Medical Partners
- Cadeira de estudo: Debbie Gipson, MD, C.S. Mott Children's Hospital
Datas de registro do estudo
Datas Principais do Estudo
Início do estudo
Conclusão Primária (Real)
Conclusão do estudo (Real)
Datas de inscrição no estudo
Enviado pela primeira vez
Enviado pela primeira vez que atendeu aos critérios de CQ
Primeira postagem (Estimativa)
Atualizações de registro de estudo
Última Atualização Postada (Estimativa)
Última atualização enviada que atendeu aos critérios de controle de qualidade
Última verificação
Mais Informações
Termos relacionados a este estudo
Termos MeSH relevantes adicionais
Outros números de identificação do estudo
- 6802
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