The following volunteer research clinical trial opportunities have been shared at the request of investigators in order to inform our patient population about the opportunity to participate in the study. If you are interested in participating, please reach out directly to the investigators below.
The Alliance does not endorse any particular research study and is not responsible for the accuracy of the information provided by the investigator.
Examining the mental health impact of delayed diagnosis and invalidation in the Pheochromocytoma (PHEO) and Paraganglioma (PGL) patient population
Time Frame
The time frame of the study is approximately three months.
Contact Info for Researchers
See contact info on flyer.
General Inclusion Criteria
You must be 18 years or older, English speaking, and have a diagnosis of either Pheochromocytoma or Paraganglioma to participate.
Research Summary
The purpose of this study is to explore the psychological experiences associated with diagnosis and health care in the pheochromocytoma/paraganglioma patient population.
Funding Source
Research lab start-up funds from Dr. Petts Santer. Funding through the duration of the project.
Participation Obligations
Complete an online survey
Potential Benefit to Participants
There is no direct benefit to you from participating; however, it is hoped that the knowledge gained will be of benefit to others in the future and may advance our understanding of treating the pheochromocytoma/paraganglioma patient population.
posted 3/25
KinLET
A Multicenter, Open-label, Interventional Phase I Trial to Determine the Dose and Evaluate the Pharmacokinetics (PK) and Safety of Lutetium Lu 177 Edotreotide Targeted Radiopharmaceutical Therapy (RPT) as Monotherapy or Following Standard of Care (SoC) for the Treatment of Somatostatin Receptor-positive Tumors in the Pediatric Population.
Link to the clinicaltrials.gov info
Patient Flyer
Time Frame
Expected first patient is Q2-2025 and study completion is estimated for 2034.
Contact Info for Researchers
Clinical Trial Manager: Shahanaz Rahman, MPH
+49 89 32989866000
info-solucin@itm-radiopharma.com
General Inclusion Criteria
Inclusion Criteria:
• Participants aged ≥ 24 months and < 18 years
• Confirmed diagnosis of tumors with SSTR-positive expression by IHC including NETs, CNS, Lymphoma, Rhabdomyosarcoma, Ewing sarcoma family of tumors, Gastrointestinal Stromal Tumor (GIST)
• Tumor which is relapsed or is refractory to ≥1 line of prior therapy
• Tumor lesion uptake (primary or metastatic lesions) by locally available functional imaging (111In-based, 99mTc-based, or 68Gabased SSTR SPECT/CT or PET/CT imaging)
• In case of sequential treatment followed by SoC or prior therapy, washout period applies before starting targeted RPT
Exclusion Criteria:
• Patients who received prior systemic targeted RPT, oncologic immune vaccine or CAR-T cell therapy
• Prior treatment with meta-iodobenzylguanidine and/or with external beam radiation, not to exceed total exposure of 2 GY and 23 GY to bone marrow and kidney, respectively.
• Presence of severe renal, hepatic, electrolyte, cardiovascular, or hematological dysfunction
• Pregnant or breastfeeding women
Research Summary
The purpose of KinLET is to learn about the safety and side effects and to determine the appropriate dosage of Lutetium Lu 177 Edotreotide in pediatric participants. Participants must have received at least one prior anti-cancer treatment and must have somatosatin receptor positive disease confirmed by imaging and a tissue sample to be eligible for the study. Once a participant is determined to be eligible to join the KinLET study, they will receive Lutetium Lu 177 Edotreotide by IV infusion approximately every 8 weeks for a maximum of 6 doses. The total treatment time is 1 year, and participants will continue in safety follow-up for 5 years.
Funding Source
ITM Solucin GmbH, Study Completion (Estimated) 2034
Participation Obligations
Receive study Treatments, Imaging Assessments and Study Visit Assessments (Pregancy test, Vital Signs, Physical Examination, Blood and Urine Sample Collection, ECG) & Quality of Life Questionnaires
Potential Benefit to Participants
By receiving the study drug, participants may benefit from tumor treatment. Lutetium Lu 177 edotreotide (RPT) aims to slow down, reduce the size, or even stop tumor growth. Additionally, the “targeting” feature of Lutetium Lu 177 edotreotide may result in less damage to the healthy tissues that surround the tumors, resulting in less side effects compared to standard radiation therapies. RPT can potentially have a favorable benefit-risk ratio, even in participants with advanced disease.
posted 1/25
Ground Truth Data for Brain Tumors
You are invited to participate in designing a better way to look at glomus jugulare tumors. The purpose of this study is to develop a dataset of glomus jugulare tumors so we can develop them into 3D models from brain MRIs. If you agree to participate, you will be asked to send your MRI images through a secure link to our online database.
Your participation is voluntary. You can refuse to participate or withdraw from this study at any time. If you decide to participate, you may still refuse to answer any questions that make you feel uncomfortable.
Time Frame
2 years
Contact Info for Researchers
Principal Investigators Daniel Wiznia, MD and Steven Tommasini, PhD at 203-292-0980.
General Inclusion Criteria
Patients with a glomus jugulare tumor(s).
Research Summary
The purpose of this research study is to work towards establishing an innovative Brain Tumor Volumetric Analysis Center to translate personalized medicine diagnostics for patients suffering from rare diseases such as glomus jugulare tumors.
Study activities will include: We are going to develop a formula to measure tumor size volumetrically instead of the current process (linearly). In doing so, we need over 100 images to create this formula, so we can be precise with our measurement process. Additionally, you will be asked to complete some survey questions about your glomus jugulare experience, along with uploading your MRI images to a secure server.
Your involvement will require no more than 45 minutes to complete the demographics and upload the MRI images over 1 instance.
There may be some risks from participating in this study. There are no physical risks to the study. The main risk associated with the study is the possibility that confidential information obtained during the study will be disclosed given the association of a medical disease.
The study may have no benefits to you. However, the repository will help us develop a new method for evaluating tumor growth for glomus jugulare tumors
Taking part in this study is your choice. You can choose to take part, or you can choose not to take part in this study. You also can change your mind at any time. Whatever choice you make will not have any effect on your relationship with future research at Yale School of Medicine.
If you are interested in learning more about the study, please continue reading, or have someone read to you, the rest of this document. Ask the study staff questions about anything you do not understand. Once you understand the study, we will ask you if you wish to participate; if so, we will continue with the study procedures described in this form.
Funding Source
Yale Center of Clinical Investigation
Participation Obligations
If the member is interested, they will reach out to 3dtumorlab@yale.edu expressing their interest in sharing their Glomus Jugulare MRI images.
We will set up a Zoom meeting for screening to determine if they are eligible for the study.
If eligible, the member will be provided with the following via email while still on the Zoom call:
1. An electronic information sheet (outlining information about the study)
2. A Qualtrics link where they will complete a demographic questionnaire
3. An information sheet about how to zip and upload MRIs
4. A secure OneDrive link where they can upload their images
After confirming that they would still like to participate in the study, the participant will fill out the Qualtrics questionnaire. They will then upload their images to the OneDrive link and will have the opportunity to ask any questions during this process.
Potential Benefit to Participants
There are no potential benefits to participants, only potential benefits related to research findings.
posted 10/24
Phase 1 Dose Escalation Study of Systemically Administered IL13Rα2 Chimeric Antigen Receptor (CAR) T cells after a Nonmyeloablative Conditioning Regimen in Patients with Metastatic Melanoma and Other Solid Tumors.
Link to the Study
Patient Flyer
More information for participants
Time Frame
Time frame is 4 years.
Names & Contact Info for Researchers
Study Sponsor: Anusha Kalbasi, MD (akalbasi@stanford.edu); UCLA Site PI: Antoni Ribas, MD, PhD (aribas@mednet.ucla.edu); Main Study Contact: Christy Sidhu (PICICenterResearch@mednet.ucla.edu)
General Inclusion Criteria
Stage IIIC or IV melanoma (including brain metastases); Other metastatic, solid tumors after Standard of Care therapy; Confirmed IL13Ra2 tumor expression, Adequate bone marrow and major organ function to undergo a stem cell transplant; willing/able to sign Informed Consent.
Participants are encouraged to pre-screen which includes the following steps:
- Providing your consent by telephone with a member of the study team
- The study team will request your tumor samples from the facility where your biopsy or surgery material is stored.
- The study team will test your tissue for IL13Ra2 expression by IHC and report the results to you and your physician.
Research Summary
This phase I trial studies the side effects and best dose of modified immune cells (IL13Ralpha2 CAR T cells) after a chemotherapy conditioning regimen for the treatment of patients with stage IIIC or IV melanoma. The study agent is called IL13Ralpha2 CAR T cells. T cells are a special type of white blood cell (immune cells) that have the ability to kill tumor cells. The T cells are obtained from the patients own blood, grown in a laboratory, and modified by adding the IL13Ralpha2 CAR gene. The IL13Ralpha2 CAR gene is inserted into T cells with a virus called a lentivirus. The lentivirus allows cells to make the IL13Ralpha2 CAR protein. This CAR has been designed to bind to a protein on the surface of tumor cells called IL13Ralpha2. This study is being done to determine the dose at which the gene-modified immune cells are safe, how long the cells stay in the body, and if the cells are able to attack the cancer.
Funding Source & Duration
California Institute for Regenerative Medicine (CIRM); Parker Institute for Cancer Immunotherapy; Melanoma Research Alliance (MRA) – 4+ years
Participation Obligations
(1) Sign Informed Consent for participation; (2) Undergo screening procedures at UCLA; (3) Receive a single IL13Ra2 CART infusion at UCLA; (4) Maintain active follow up post-CART infusion.
Potential Benefit to Participants
The primary goal of this study is to test the safety of systemic IL13Ra2 CART administration. Patients may receive therapeutic benefit from participating in this trial and receiving IL13Ra2 CART cells. Furthermore, the results of this trial will help inform the medical community about the safety, feasibility, and efficacy of IL13Ra2 CART cells in solid tumors.
posted 6/24
Multi-state assessment of attitudes about vaccines for primary cancer prevention in adolescents and young adults with inherited cancer predisposition.
Link to the Study
Time Frame
Time frame is 4 years, approximate ending date is in 2025.
Names & Contact Info for Researchers
Soren Feola – 801.585.343, soren.feola@hci.utah.edu Wendy Kohlmann-Wendy.Kohlmann@hci.utah.edu
General Inclusion Criteria
The study population will be parents/caregivers of children between the ages of 12-17 years and patients between ages 18-26 years.
Research Summary
This study will survey families with genetic risks to understand their thoughts specifically about the HPV vaccine. The end goal is to tailor interventions that address specific concerns and promote informed decision-making among these high-risk populations.
Funding Source & Duration
Duration is 4 years. Source is from grant funding that has already been awarded to investigators.
Participation Obligations
Fill out a survey that takes roughly 20-30 minutes.
Potential Benefit to Participants
Individual participants will receive a gift card for their time filling out the survey. This research will benefit the scientific community by advancing a topic with limited relevant literature. Specifically, we aim to understand if predisposition syndromes play a role in families’ decision-making about vaccines.
posted 4/24
