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Would you like to share your views to help improve programs and services for patients, or help researchers gain a better understanding of the challenges of living with kidney disease?

Current opportunities

 


GENIE Study about Idiopathic nephrotic syndrome

Harvard Medical School/Brigham and Women’s Hospital are running a one-month long Summer camp at Walt Disney World, Orlando with a complete menu of gluten-and dairy-free products to evaluate the effectiveness of a dietary change in kids with steroid-resistant nephrotic syndrome (NS).  The patients will also be genetically characterized and investigated for potential genetic causes of NS that may influence treatment response and unrecognized food allergies.

Patients are eligible for the study if he/she:

  • is 2 to 21 years of age
  • has FSGS or minimal change disease (MCD) confirmed by renal biopsy (copy of biopsy results needed)
  • has an estimated glomerular filtration rate above 60 mL/min as defined by bedside Schwartz formula (GFR = [Height in cm] x 0.413 / serum creatinine (mg/dL)
  • Has not responded to steroid treatment after at least 3 months
  • Has a urine protein/creatinine ratio ≥ 3 at two different measures.
  • Does not have a known allergy to milk or gluten
  • Does not have a known podocyte genetic mutation.

Patients should be willing and able to participate in a month-long summer camp in Orlando, Florida, with the attendance of a parent if the child is too young to come by his/herself. The study will last 4 weeks.

The camp will occur from July 22th to August 19th, 2017. Housing, food, study-related tests and activities will be provided at no cost, except plane tickets. No medications will be tested on this trial and children may continue taking their medications during the camp.

About the study (pdf)

If you know someone who may be interested in participating, please contact Hayley Pomeroy, study coordinator, at hpomeroy@bwh.partners.org or at (617) 525- 6823.


The ATHENA Study: Mapping the Course of Alport syndrome

Do you have Alport syndrome? Do you know someone who does? Now is your chance – you can do your part to map the course of Alport syndrome if you:

  • Are 16 years of age or older, and
  • Have been diagnosed with Alport syndrome

Information obtained from this study is critical in designing future clinical trials in patients with Alport syndrome. The ATHENA study is designed to learn more about the changes in the kidneys in patients with Alport syndrome. It is an observational study and does not involve the use of any investigational drugs.

Please note that you are not qualified for this study if you have received a kidney transplant or are currently on dialysis.

To locate your nearest study center, please use this site locator. The study team will discuss whether you are eligible to participate.

At this time, study documents are only available in English. However, if you wish to participate and require French-language materials, please note this in the comment field of your initial response through the form provided.


 

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