El síndrome nefrótico no es una enfermedad en sí, sino un grupo de signos y síntomas que resultan del daño en la parte del riñón que filtra la sangre (glomérulos).

Los síntomas comunes incluyen:

• Orina espumosa (llamada proteinuria) causada por el “derrame” de proteínas en la orina
• Hinchazón grave en partes del cuerpo, más notoria alrededor de los ojos, las manos, los pies y el abdomen (llamada edema)
• Aumento de peso debido a la acumulación de líquido adicional.
• Fatiga
• Pérdida de apetito
• Niveles bajos de proteínas en la sangre (hipoalbuminemia)
• Niveles de grasa y colesterol en sangre más altos de lo normal (hiperlipidemia)

El síndrome nefrótico normalmente se puede diagnosticar con un análisis de orina.

El síndrome nefrótico puede ser de naturaleza “primaria” o “secundaria”.

Las enfermedades que afectan sólo a los riñones se denominan causas primarias del síndrome nefrótico. Los médicos suelen llamar a estas enfermedades "idiopáticas", lo que significa que surgen de una causa desconocida. Algunas de estas enfermedades incluyen:

• Enfermedad de cambios mínimos (MCD): más común en niños
• Glomeruloesclerosis focal y segmentaria (FSGS)
• Nefropatía membranosa (MN): más común en adultos
• Nefropatía por IgA (NIgA)

El síndrome nefrótico secundario es causado por una afección sistémica subyacente como diabetes, lupus, VIH y otras.

Los estudios clínicos son todos aquellos que involucran a personas. Hay dos tipos principales: observacionales e intervencionistas. En un ensayo observacional, los investigadores hacen un seguimiento de los resultados de salud a lo largo del tiempo en grupos de participantes para buscar patrones que nos ayuden a comprender mejor una enfermedad. En un ensayo intervencionista, los participantes reciben intervenciones específicas, que pueden incluir nuevos tratamientos o cambios de comportamiento (por ejemplo, cambios en la dieta). Para obtener más información sobre la investigación clínica, visite Visita el sitio web de NephCure.

By participating in a clinical trial, you not only gain access to cutting-edge & expert care, but you are participating in a potential medical breakthrough that could help many more people in the future. During treatment, you will be monitored closely by top physicians and researchers. Should the medical treatment being tested in the clinical trial be effective, you will be one of the first people to reap the benefits before it is released to the public.

While participating in clinical trials, the biggest commitment is your time. Balancing routine clinical checkups, going to regularly scheduled physician appointments, and following the study protocol are commitments you may have during a clinical trial. Clear communication between physicians and patients is extremely important throughout the clinical trial,  as is commitment to the treatment schedule.

Remember, each clinical trial is different and will have different commitments. Ask about what is involved in the trial at your first appointment to better understand what the commitment is.

Also, you may stop participating at any time during a clinical trial with no questions asked.

No! Your current doctor will work closely with the study team to monitor your health. When the study is completed, you can go back to seeing your current doctor and ONLY your current doctor if that is what you choose.

If there is not a site for a clinical trial nearby, you can ask the study team about the possibility of travel reimbursements (paying you back for your travel). Alternatively, you can ask the study team about the possibility of remote participation.

If it is not possible for you to get to study site, there are still many research studies that you can participate in from home. Look for studies that say “Worldwide Participation” on your list and talk to the team about how you can help.

Patients that are participating in a clinical trial are under constant care by expert doctors and researchers who make the health and safety of the patient their priority. Constant communication and regular check-ins between the patient and the researcher are highly encouraged. If you do not feel well at any point during the trial, talk to the research team and your physician immediately to decide what the best next steps are.

After the study is completed, the data is then collected, analyzed, and shared with experts and several government agencies for the drug approval process.

Participants can continue to take the medication, should it help, but they are not required to continue with any other phases of the trials. Each clinical trial has a different set of rules about what happens after the trial is over, so be sure to talk to your research team.