DUET Study Releases Preliminary Results (SPOILER it looks promising!) September 7, 2016 by Kylie Karley On September 7, 2016, Retrophin Inc. released the “Top Line” results from their recently completed DUET study, a Phase 2 clinical trial testing safety and efficacy of Sparsentan for FSGS patients. Results showed promise for Sparsentan’s effectiveness at reducing proteinuria in patients with FSGS, with one group of patients seeing an average reduction of 44.8%. The DUET study included 96 patients, and only one serious adverse side effect (anemia) was reported. All patients chose to extend their treatment with Sparsentan during the trial’s open label extension period. Alvin Shih MD, the executive vice-president for Retrophin Inc., said “significant reductions in proteinuria, along with a well-tolerated preliminary safety profile have us excited about being one step closer to providing a new treatment option for patients with FSGS.” NephCure Kidney International is excited about these results and support Dr. Shih’s hope that we are moving closer to providing a new, effective, and safe treatment option for FSGS patients. Mark Stone, Chief Executive Officer of NephCure Kidney International, remarked “These preliminary results are very exciting for our community. This gives us hope that better treatment options will be available for our families in the near future.” NephCure Kidney International would like to thank everyone who contributed time, talent, and resources to this study. Thank you, especially, to the patients and families who participated and helped bring effective treatments within reach. Read the official press release here
Brenda says September 8, 2016 at 3:52 pm Praise the Lord I know FSGS is going to lose the battle in the near future!
Brenda says September 17, 2016 at 2:15 pm I really hope it does. I was diagnosed almost 3 years ago and am in stage 4. I never have energy and am trying to raise 10 year old twins alone. I NEED MORE ENERGY.
Velisa Gorham says January 3, 2017 at 11:36 am My husband was diagnosed a few years back we are also on stage 4. He takes a kidney supplement called Kidney Well II along with Alisma and Phyto Antioxidants. He takes a vitamin called ProRenal. Both products were designed by Kidney Doctors and master herbalists. THEY ARE WORKING. To get more info on kidney well go to http://www.getwellnatural.com. it is very exspensive but it works. To get more info on ProRenal go to myprorenal.com. These supplements will give you more energy and help control the protein leaking. My husband is more healthy now than ever before. Also, put more fresh veggies and fruits in your diet. But be careful and eat the ones that are low in potassium. Talk with your doctor and do the research about these supplements before starting them. I pray that they will help you as they have helped us. Stay blessed and know that God will always take care of you. MO MATTER WHAT.His word says we are HEALED. Receive it and believe it.
Joan Bristow says September 14, 2016 at 2:09 pm My daughter Elise is in the Duet study! She’s living proof it works!!!
Aman says April 8, 2017 at 12:34 pm Hello Joan, I am very happy to hear the positive effect this drug has had for your daughter. May the progress continue. I would love to hear more about your daughter’s story as I help my young brother decide whether or not to try it. Any insight would be greatly appreciated.
sherry says September 23, 2016 at 6:58 am I will take 44.8% reduction! anything to slow FSGS down/cure. As a mother and wife, and watching my husband, go thru dialysis and sit with him and to know my 2 daughters and son who have been diagnosed already will also be going thru this unless a treatment is found. thank you for your research, time and commitment to this disease from a grateful mother.
Shannon says November 12, 2016 at 5:09 am I am at stage 3 and my physician is considering Acthar injections, does any one know of this drug?
Chelsey Fix says November 16, 2016 at 3:11 pm Hi Shannon, Thanks for the comment! You can learn about Acthar here – https://nephcure.org/livingwithkidneydisease/treatment-options/acthar/ If you’re looking to hear about people’s experiences with the drug, you could try posing this question on our online, secure chat forum (called NephSpace – https://nephcure.org/connect/nephspace/). I hope this is helpful! please email me at cfix@nephcure.org with any other questions.
Monique says November 20, 2016 at 8:47 am How long would it be before it could be on the market? I was just diagnosed with c-fsgs at 30.