Clinical Trials and Studies

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• Alpelisib in PIK3CA Associated Lymphatic Malformations

  This study (IRB #23-021374) has several parts and involves taking a study drug called alpelisib. Some participants enrolled into Stage 2 will receive a placebo for the first part of the study (24 weeks) and will then receive the study drug. The purpose of this study is to find out if the study drug is safe and effective (can help) people with a confirmed diagnosis of lymphatic malformation (LyM) and a documented mutation in the PIK3CA gene.

  Eligibility & Criteria

  Study Phase:  Phase II, Phase III
  Eligible Age Range:  2 - 60 Years
  Gender:  All
  Study Categories:  Adults, Children

  For more information or to participate, contact the study team at CVAPResearch@chop.edu or 267-426-0743.

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• Imaging Sodium and Lymphatics in Lymphedema

  This is a research opportunity for people with or at risk for leg lymphedema (LE).

  

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• Stanford Arm Lymphedema Drug (HEAL) Study

  Researchers at Stanford University in Stanford, CA are conducting a study on the response to a drug for lymphedema. You may be eligible for this study if you have single arm lymphedema and qualify for the drug therapy. Participants will not be paid for their participation. The enrollment duration is approximately 9 months.

  Key Inclusion Criteria:
  1. Single arm lymphedema
  2. Lymphedema of ≥ 6 months duration.
  3. Male or female.
  4. Ages 18-75.

  The Stanford Center for Lymphatic and Venous Disorders evaluate all prospective participants to assess if they are appropriate candidates for the study. There are four research-related appointments.

  For more information, please contact:
  Marissa Dobry, Clinical Research Coordinator
  Email address: heal-lymphedema-study@stanford.edu

  For general information about participant rights, contact 1-650-725-9820.

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  Clinical Research Study Optimizing MLD

  Physical and Occupational therapists, plastic and vascular surgeons, and lymphatic researchers may all teach Manual Lymphatic Drainage (MLD) a little differently. Providers from UCHealth and the University of Colorado teamed up to improve and learn to teach MLD the same way. This is to reduce the lymphedema burden on patients.

  

  For more information, contact NargisKalia, MPH at 303-724-7361 or nargis.kalia@cuanschutz.edu

• The World’s First Implantable Device for Lymphedema Treatment

  The study consists in a first-in-man clinical investigation for LymphoPilot, an investigational implantable medical device. LymphoPilot is composed of an implanted part and an external wearable device. The implanted part (pump, drainage catheter and output catheter), is implanted in the subcutaneous tissue of the arm and drains excess fluids to the supraclavicular subcutaneous tissue, where fluids are naturally reabsorbed by the healthy lymphatic and venous system. The external part consists in a wearable controller used to activate the implanted pump.

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• Lymphedema Patient Survey

  Do you have lymphedema? Please respond to this anonymous on-line survey: Lymphedema Patient Survey

  It will take only 3 minutes, but your participation is extremely important! The data that we collect will help us to inform doctors, hospitals, third party payers and the government about the lymphedema patient experience.

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• Lymphatic Anatomy and Function Study - Breast Cancer Survivors

  Researchers from the Boston Lymphatic Center at Beth Israel Deaconess Medical Center are conducting a study to identify normal variation in lymphatic anatomy in the upper extremities of female breast cancer survivors.  For more information, download the flyer below.

  Flyer_Breast_Cancer_Survivors.pdf

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• Lymphatic Anatomy and Function Study - Healthy Volunteers

  Researchers from the Boston Lymphatic Center at Beth Israel Deaconess Medical Center are conducting a study to identify normal variation in lymphatic anatomy in the upper extremities of healthy volunteers.  For more information, download the flyer below.

  Flyer_Healthy_Volunteers.pdf

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• Analysis of Role Changes for Women with Breast Cancer Related Lymphedema to Return to Work

  IS THIS STUDY RIGHT FOR YOU?

  ❖ Have you been diagnosed with breast cancer related lymphedema?
  ❖ Do you experience difficulty with everyday tasks due to symptoms associated with breast cancer related lymphedema (BCRL)?
  ❖ Are you limited with your ability to perform successfully at work due to symptoms?
  ❖ Do you currently receive rehabilitation services for lymphedema management secondary to breast cancer?
  ❖ Inclusion criteria: female between the ages of 18-65, diagnosed with breast cancer or breast cancer related lymphedema.
  ❖ Exclusion criteria: outside of the age parameters listed in the inclusion, not a female, does not have a diagnosis of breast cancer or breast cancer related lymphedema.

  WHAT WOULD YOU HAVE TO DO?

  ● Participate in a short 15 question internet survey, answering the questions to the best of your ability.
  ● The survey will be anonymized, and no collection of any identifiable information will occur to avoid any violation of protection to the participants.
  ● Private message the study investigator on the Facebook support group to participate in the study.

  
  This study is voluntary and you may withdraw at any time. Your information will be kept confidential and no information that could potentially identify you will be published.

  If you would like to receive more information regarding the study, please contact the investigator for this study:

  Soraya Martinez, Occupational Therapy Doctorate Student at the University of St. Augustine for Health Sciences, Email: s.martinez@usa.edu; Phone number: 407-535-7749

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• An update on the priorities for women living with breast cancer related lymphoedema

  An update on the priorities for women living with breast cancer related lymphoedema and the relationship with severity
  The University of Sydney is conducting an online survey looking at the needs of women living with breast cancer-related lymphoedema.  Participation in this research study is voluntary.  The survey will take approximately 20 minutes to complete.

  Women who have been diagnosed with breast cancer and as a result of treatment and have experienced upper limb swelling (lymphoedema). Women should have completed treatment for their breast cancer (except for hormone treatment) at least 6 months ago and have experienced upper limb lymphoedema for more than 12 months

  A survey will be completed online which will investigate your needs arising from living with upper limb lymphoedema including:
  · The severity of your lymphoedema.
  · How lymphoedema has impacted your daily and working life.

  If you have breast cancer related lymphoedema with access to the internet using a computer, laptop, Ipad or smart phone we would love to hear from you!

  To participate in the survey, click here.

  If you have questions or would like more information about participating, please contact us at jfre8103@uni.sydney.edu.au.

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