Update on NOSE Study Funded by Cure HHT

NOSEThe North American Study of Epistaxis in HHT, funded and sponsored by Cure HHT, completed enrollment with the last patient having been evaluated in July 2014.  Between August 2011 and March 2014, Cure HHT enrolled 121 patients at six of the US HHT Centers of Excellence.

Interest in the treatment was actually so high that enrollment was slowed because patients were concerned about being placed on placebo. If it hadn't been apparent before, this observation further confirmed how important research is to finding treatments and a cure for our community.

While the preliminary results of the study were presented at the HHT scientific conference in June 2015, the study must be officially published before results can be shared with the public. The focus is now on featuring the study in a major medical journal so HHT experts around the world can critically review and draw their own conclusions.

The article was submitted to a renowned medical journal this week, and if accepted will hopefully be published in the next six months. Though we cannot release specific results at this time, we can say the study was well conducted and there were no significant side effects from the drugs. The majority of patients also noted some degree of symptom improvement!

At it's core, this study has taught us which drugs work and which don’t. Hopefully, we can build on this with even greater and quicker research participation in future studies. The more that patients get involved, the sooner we get results that impact the treatment of HHT.

> For More Information on the NOSE Study

> Studies Currently Recruiting

Nosebleed Management

October 19, 2015
Presented by: Dr. David Poetker, Froedtert & Medical College of Wisconsin HHT Center

Presenter

Dr. David Poetker is a board-certified otolaryngologist at the Froedtert & Medical College of Wisconsin HHT Center, specializing in all disorders of the nose and sinuses including epistaxis (nose bleeds). He has received specialty training at the Oregon Health and Science University where he worked with many HHT patients, receiving valuable training in managing nosebleeds.  He remains very interested in epistaxis and HHT management and has authored several peer-reviewed articles on this topic.

Webinar

Telangiectasias in the nose, along with the nosebleeds they cause, are the most common sign of HHT. About 90% of people with HHT will ultimately develop recurring nosebleeds by the time they reach their forties. The average age at which nosebleeds begin is 12, but they can begin as early as infancy, or as late as adulthood. The nosebleeds can be as infrequent as a few times a year or can occur daily. When a nosebleed occurs it can last anywhere from seconds to hours. The amount of blood lost may be one or two drops, or enough to require an emergency blood transfusion.

Join Dr. David Poetker as he discusses the full-spectrum of nosebleed therapies including nasal packing, bi-polar cautery, coblation and surgical procedures. HHT-related nosebleeds can impact quality of life so it is important to understand the various treatment options since no one treatment works for all HHT patients.

Webinar Highlights

  • Best products to use for nasal packing
  • HANDOUT - Treatment options including new method of Coblation
  • A perforated septum can be repaired but make sure you go to an ENT with a successful track record because it's a difficult procedure
  • Clinical trials help advance drug therapies through FDA so it's accessible and affordable to all patients; consider participation in Avastin Study at Stanford University (travel funds available)
  • Epistaxis Severity Score (ESS) is a way to measure a treatments effectiveness and should be shared with your doctor

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.

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 (Please write "webinar" in comment section of donation form)

Post Traumatic Stress and Depression in Adults with HHT

surveyDr. Shruti Chaturved at Vanderbilt University Medical Center is conducting a research survey to investigate the symptoms of post traumatic stress disorder and depression in individuals with HHT.

Objective: To determine if individuals living with HHT experience symptoms of post-traumatic stress and depression because of their condition.

Why Participate: People who have experienced a stressful event such as serious injury, threatened death or serious illness often have problems with anxiety, depression and post-traumatic stress disorder. Your involvement in the study will help us understand the psychological impact of living with HHT and identify resources to assist in improving quality of life for HHT patients.

EligibilityIf you have an HHT diagnosis you are eligible to participate in this research study. No other qualifications are necessary. The survey will take 10-15 minutes to complete.

Get Started:

Open the survey in your web browser by clicking the link below:
Post traumatic stress and depression in adults with Hereditary Hemorrhagic Telangiectasia

If the link above does not work, copy the link below into your web browser:
https://redcap.vanderbilt.edu/surveys/?s=TYNE7YMYMF

Privacy: All responses will be anonymous and no identifying information will be collected. The data will be kept completely confidential and stored in a secure electronic database at Vanderbilt University. Only the investigators will have access to the database and information will not be shared with any external agencies.  The results of this study may be published, however, individual information will not be disclosed.

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