RESEARCH

Find clinical trials and interesting journal articles here

Clinical Trials

Journal Articles

Improving FAP Outcomes Through Research

 

Life’s a Polyp Foundation is dedicated to creating change for FAP patients and families by funding and promoting new FAP research that will go beyond only delaying surgery and work towards preventing surgery altogether.

By doing so, this will change the care and future for patients. Children would no longer require extensive surveillance for cancers staring at birth. The dread of requiring colon removal and possible future surgeries can be alleviated. As well as the fear that hangs over many patients and caregivers of ongoing cancer risk and the anxiety of requiring consistent surveillance.

We can imagine this future and are working towards making it reality sooner than later.

 

Research Surveys

Clinical Trials

Due to the sheer number of clinical trials for the associated cancers of FAP, the below linkings are to the direct recruiting results for each associated cancer. Following these are individual clinical trials for FAP and Desmoid.

A Personalized Surveillance and Intervention Protocol for Patients With Familial Adenomatous Polyposis That Have Undergone (Procto) Colectomy

Sponsor:

Academisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)

Principal Investigator:

Study Contact

Name:

Evelien Dekker, MD, PhD

Phone:

0031205661260

Email:

e.dekker@amc.uva.nl

Study Description:

The purpose of this study is to determine the efficacy and safety of a personalised surveillance and intervention protocol for patients with familial adenomatous polyposis (FAP) that have undergone (procto)colectomy.
See Study Details

A Prospective Clinical Study on the Safety and Efficacy of Radiofrequency Ablation for the Treatment of Patients With Desmoid Tumors (RFAdesmoid)

Sponsor:

Blokhin's Russian Cancer Research Center

Principal Investigator:

Study Contact

Name:

Artem Galustov

Phone:

9169117818

Email:

artem115583@mail.ru

Study Description:

This is a prospective study on the safety and effectiveness of radiofrequency ablation in patients with desmoid tumors. In the study group, all patients after radiofrequency ablation of the tumor after 1 month will be evaluated using MRI and CT studies and, if solid components of the tumor are detected, repeated surgical treatment is performed followed by active monitoring after 1 month. In the absence of a solid component, the effect is estimated by the volume of the necrotic process and monitored in dynamics every 3 months.
See Study Details

A Study in Adults With Desmoid Tumors

Sponsor:

Elpiscience (Suzhou) Biopharma, Ltd.

Principal Investigator:

Study Contact

Name:

Jiayu Song

Phone:

(+86) 21 50651310

Email:

ClinicalOperation@elpiscience.com

Study Description:

This is an open-label, multicenter, single-arm phase 2 clinical study designed to evaluate the efficacy, safety, tolerability, patient-reported outcomes (PROs), pharmacokinetics (PK), anti-drug antibody (ADA) and pharmacodynamics (PD) of ES014 in adult desmoid tumor patients.
See Study Details

An Investigational Drug (TPST-1495) in Patients With Familial Adenomatous Polyposis

Sponsor:

National Cancer Institute (NCI)

Principal Investigator:

Niloy J Samadder, University of Wisconsin Carbone Cancer Center - University Hospital

Study Contact

Name:

Phone:

Email:

Study Description:

This open-label phase II trial tests how well TPST-1495 works in reducing the number of polyps in the small bowel and colon in patients with familial adenomatous polyposis (FAP). FAP is an inherited condition in which numerous polyps (growths that protrude from mucous membranes) form on the inside walls of the colon and rectum. It increases the risk for colon cancer. TPST-1495 binds to specific prostaglandin receptors. TPST-1495 is a dual antagonist of the prostaglandin E2 (PGE2) receptor subtypes EP2 and EP4, while sparing the immune-stimulating EP1 and EP3 receptors. TPST-1495 may help reduce the number of polyps in the small bowel and colon in patients with FAP.
See Study Details

Arterial Chemoembolization for the Treatment of Desmoid Fibromatosis (Embodesmo)

Sponsor:

Istituto Ortopedico Rizzoli

Principal Investigator:

Study Contact

Name:

Giancarlo Facchini, MD

Phone:

+39 333 650 0944

Email:

giancarlo.facchini@ior.it

Study Description:

Desmoid fibromatoses are rare (1-2 cases/million per year) and locally aggressive mesenchymal tumors. For asymptomatic disease, current guidelines suggest an initial period of active surveillance. The current scientific evidence regarding the efficacy and safety of the treatment of desmoid fibromatosis by arterial embolization is constituted by several retrospective and prospective studies. Embolization of desmoid tumors alone, without chemotherapy, on the contrary, has been shown to be inefficient. Using Doxorubicin in desmoid fibromatosis is effective but associated with systemic toxicity. Consequently, this drug is reserved for symptomatic, nonresponsive, rapidly growing or life-threatening tumors. The intrinsic hypervascularity of desmoid tissue can be exploited as a conduit to achieve local distribution of Doxorubicin by navigation of a catheter endovascular.
See Study Details

Assessment of Compliance With Monitoring Conducted by a Physician in Person or by a Nurse in Remote Monitoring (SUR-CAN)

Sponsor:

Centre Oscar Lambret

Principal Investigator:

PENEL Nicolas, MD, PhD, Centre Oscar Lambret

Study Contact

Name:

PENEL Nicolas, MD, PhD, Centre Oscar Lambret

Phone:

0320295860 / 0320295918

Email:

l-rotsaert@o-lambret.fr

Study Description:

This is a multicenter, interventional, randomized study among adult patients recently diagnosed with a rare tumor (<12 months). The study will aim to compare compliance with the personalized post-treatment surveillance plan, established for each patient according to national guidelines, when the surveillance is conducted in person by a hospital-based physician (control arm) or remotely by a trained nurse (experimental arm).
See Study Details

Chemopreventive Effect of Combination of Celecoxib and Metformin in Patients With Familial Adenomatous Polyposis

Sponsor:

Yonsei University

Principal Investigator:

Study Contact

Name:

TAE IL KIM, MD

Phone:

82-2-2228-1965

Email:

taeilkim@yuhs.ac

Study Description:

Familial adenomatous polyposis (FAP) leads to adenomas and eventual adenocarcinomas in colon and less frequently, duodenum. Chemopreventive strategies have been studied in FAP patients to delay the development of adenomas and cancers. The non-steroidal anti-inflammatory drugs (NSAIDs) and selective cyclooxygenase-2 inhibitor have shown the regression of colorectal and duodenal adenomas in FAP patients. However, these drugs showed gastrointestinal damage and cardiovascular risks, and new preventive strategies are needed. Metformin, an anti-diabetic drug, has recently been suggested to have a suppressive effect on tumorigenesis via inhibition of mTOR pathway, and have an inhibitory effect on polyp recurrence after removal of sporadic colorectal polyps. In addition, metformin has a number of potential mechanisms of cardiovascular benefit. We devised a randomized, open-label, comparative study to evaluate the effect of combination of celecoxib and metformin on polyps of colorectum and duodenum in FAP patients.
See Study Details

Colorectal Adenoma Canceration in FAP

Sponsor:

Changhai Hospital

Principal Investigator:

Jun-Jie XING, MD, Changhai Hospital

Study Contact

Name:

En-Da YU, MBBS

Phone:

8613901688626

Email:

endayu@yeah.net

Study Description:

The current internationally accepted treatment method for familial adenomatous polyposis is prophylactic total colorectal resection combined with endoscopic follow-up. However, total colorectal resection will bring a sharp decline in the quality of life of patients. Therefore, how to improve treatment methods and improve the quality of life for such patients under the premise of medical quality is the current medical focus. This study intends to establish three parallel observation cohorts, namely the surgical treatment group, the intensive colonoscopy treatment group, and the autonomous monitoring group. During the three-year study period, the investigators observed changes in the number of adenomas, carcinogenesis, and medical expenses in each group during the 3-year study period, and compared the groups to determine whether the intensive colonoscopy therapy has the possibility of delaying or replacing preventive surgery.
See Study Details

Cryoablation Versus Medical Therapy in Desmoid Tumors Progressing After Watchful Waiting (CRYODESMO-02)

Sponsor:

University Hospital, Strasbourg, France

Principal Investigator:

Afshin GANGI, MD, PhD, Hôpitaux Universitaires de Strasbourg

Study Contact

Name:

Afshin GANGI, MD,PhD

Phone:

0369550304 ext 33

Email:

afshin.gangi@chru-strasbourg.fr

Study Description:

"Wait & see" is currently the standard of care of recently diagnosed desmoid tumors (DT). In case of progression or symptomatic disease, medical therapy is nowadays widely used including chemotherapy. Cryoablation has proven to be beneficial for the treatment of large, progressive and symptomatic DT. This randomized phase II trial aims to compare cryoablation versus medical therapy in DT patients progressing after the "wait & see" period. Moreover, a cross-over design has been anticipated to allow all patients to undergo cryoablation if necessary.
See Study Details

Cryotherapy in the Treatment of Desmoid Tumors

Sponsor:

Istituto Ortopedico Rizzoli

Principal Investigator:

Study Contact

Name:

Costantino Errani, MD

Phone:

051-6366 ext 6103

Email:

costantino.errani@ior.it

Study Description:

Desmoid tumor is a benign neoplasm with an unpredictable course and a high rate of local recurrence if treated surgically. Therefore, over time the surgical approach has become conservative, preferring simple observation or medical therapy in case of disease progression through the use of hormonal therapy and low-dose chemotherapy. Since this neoplasm remains benign, our study aims to avoid chemotherapy in patients usually young through the use of a minimally invasive treatment such as cryotherapy.
See Study Details

Duodenal Polyposis Classification in FAP (DRACO)

Sponsor:

Principal Investigator:

Study Contact

Name:

Marco Vitellaro, M.D.

Phone:

+393480197920

Email:

marco.vitellaro@istitutotumori.mi.it

Study Description:

Duodenal cancer is the leading cause of cancer-related mortality in patients with familial adenomatous polyposis (FAP), yet the current Spigelman staging system provides limited predictive accuracy for advanced neoplasia. The DRACO study (Duodenal Risk Assessment in adenomatous polyposis Coli -Oncogene) is a multicenter, STROBE- and CONSORT-compliant cohort study that analyzes upper endoscopies from genetically confirmed FAP patients across independent cohorts to develop, validate, and externally test two multivariable risk models.
See Study Details

Evaluate REC-4881 in Participants With Familial Adenomatous Polyposis (FAP) (TUPELO)

Sponsor:

Recursion Pharmaceuticals Inc.

Principal Investigator:

Recursion Pharmaceuticals

Study Contact

Name:

Recursion Pharmaceuticals

Phone:

Recursion Pharmaceuticals

Email:

clinicaltrials@recursionpharma.com

Study Description:

This is a Phase 1b/2 trial to evaluate efficacy, safety, pharmacokinetics and pharmacodynamics of REC-4881 in participants with FAP. This two-part study will treat participants with phenotypic classical FAP with disease involvement of the duodenum or the residual colon/rectum/pouch as the primary disease site.
See Study Details

Familial Investigations of Childhood Cancer Predisposition (SJFAMILY)

Sponsor:

St. Jude Children's Research Hospital

Principal Investigator:

Study Contact

Name:

Kim E. Nichols, MD

Phone:

888-226-4343

Email:

referralinfo@stjude.org

Study Description:

The purpose of this protocol is to identify novel cancer predisposing genes and/or genetic variants. For this study, the investigators will establish a Data Registry linked to a Repository of biological samples. Health information, blood samples and occasionally leftover tumor samples will be collected from individuals with familial cancer. The investigators will use NGS approaches to find changes in genes that may be important in the development of familial cancer. The information gained from this study may provide new and better ways to diagnose and care for people with hereditary cancer. PRIMARY OBJECTIVE:
  • Establish a registry of families with clustering of cancer in which clinical data are linked to a repository of cryopreserved blood cells, germline DNA, and tumor tissues from the proband and other family members.
SECONDARY OBJECTIVE:
  • Identify novel cancer predisposing genes and/or genetic variants in families with clustering of cancer for which the underlying genetic basis is unknown.
See Study Details

FOG-001 in Locally Advanced or Metastatic Solid Tumors

Sponsor:

Parabilis Medicines, Inc.

Principal Investigator:

Study Contact

Name:

Phone:

(857) 259-6305

Email:

clinicaltrials@parabilismed.com

Study Description:

The goal of this clinical trial is to determine if FOG-001 is safe and effective in participants with locally advanced or metastatic solid tumors.
See Study Details

HIFU Ablation of Soft Tissue Sarcoma (SarcAblate)

Sponsor:

Oxford University Hospitals NHS Trust

Principal Investigator:

Paul C Lyon, FRCR, DPhil, Oxford University Hospitals NHS Trust

Study Contact

Name:

Paul C Lyon, FRCR, DPhil

Phone:

0300 304 7777

Email:

sarcablate@nds.ox.ac.uk

Study Description:

Around 3,300 people are diagnosed with soft tissue sarcoma (STS) each year in the UK, and a significant proportion of STS diagnoses are in people aged under 30 years. STS can arise from various tissue types and is comprised of over 50 tumour types. Although STS is treated with a combination of surgery, radiotherapy and chemotherapy, the prognosis is relatively poor with a five-year survival rate of 54%. There is an unmet need for further treatment modalities in STS. High intensity focused ultrasound (HIFU) is a non-invasive way of treating cancers with minimal side effects, low complication rate and quick recovery. Ultrasound waves are used to destroy tumour cells and improvements in technology and experience are enabling complete destruction of tumour. HIFU also releases tumour antigens, increasing the immune response against cancer. HIFU has received FDA approvals for several indications, including bone metastases and we are using a CE-approved HIFU device in Oxford (UKCA-approvals anticipated for 2023). There have been some publications from China showing promise in STS, however this technology needs further evaluation within the UK's healthcare setting. This study will recruit patients with both resectable and unresectable STS, in addition to unresectable small symptomatic desmoid tumours. 12-16 patients, and a minimum of 10 patients with malignant STS, will be treated over a maximum recruitment period of three years. HIFU treatment will be carried out as a day case procedure, and patients will be expected to be discharged home the same day. The study is designed to generate evidence regarding safety and feasibility of HIFU for ablation of STS and intra-abdominal desmoids. In addition, the study is anticipated to provide information about the efficacy of HIFU against these tumour types which can help in the design of later phase studies. Short-term outcomes include feasibility, safety and the completeness of destruction of the tumour. Long-term outcomes include one-year survival, local recurrence and quality of life metrics (including pain scores). The study will also look at immunological response following ablation of STS using both blood and tumour samples pre- and post-HIFU ablation.
See Study Details

Immunological Phenotype of Desmoid-fibromatosis-affected Patients.

Sponsor:

Fondazione IRCCS Istituto Nazionale dei Tumori, Milano

Principal Investigator:

Study Contact

Name:

Chiara Colombo, MD, Surgical Oncologist

Phone:

+390223902740

Email:

chiara.colombo@istitutotumori.mi.it

Study Description:

This observational study aims to characterize the molecular, phenotypic, and functional inflammatory and immunological profile of patients with sporadic desmoid-type fibromatosis undergoing either active surveillance or systemic therapy. The study includes analysis of the tumor immune microenvironment (TIME), circulating immune and inflammatory molecules, immune cell subsets, and circulating tumor DNA (ctDNA). The goal is to identify biomarkers associated with spontaneous or treatment-induced tumor regression and to evaluate potential correlations with specific ß-catenin mutations.
See Study Details

Integrated Cancer Repository for Cancer Research (iCaRe2)

Sponsor:

University of Nebraska

Principal Investigator:

Study Contact

Name:

Kurt Fisher, MD, PhD

Phone:

402-559-9025

Email:

kfisher@unmc.edu

Study Description:

The iCaRe2 is a multi-institutional resource created and maintained by the Fred & Pamela Buffett Cancer Center to collect and manage standardized, multi-dimensional, longitudinal data and biospecimens on consented adult cancer patients, high-risk individuals, and normal controls. The distinct characteristic of the iCaRe2 is its geographical coverage, with a significant percentage of small and rural hospitals and cancer centers. The iCaRe2 advances comprehensive studies of risk factors of cancer development and progression and enables the design of novel strategies for prevention, screening, early detection and personalized treatment of cancer. Centers with expertise in cancer epidemiology, genetics, biology, early detection, and patient care can collaborate by using the iCaRe2 as a platform for cohort and population studies.
See Study Details

Investigation of β-hydroxybutyrate Supplementation as Chemoprevention in Familial Adenomatous Polyposis (BHB-FAP)

Sponsor:

Abramson Cancer Center at Penn Medicine

Principal Investigator:

Bryson W Katona, MD, PhD, University of Pennsylvania

Study Contact

Name:

Bryson W Katona, MD, PhD

Phone:

215-349-8222

Email:

bryson.katona@pennmedicine.upenn.edu

Study Description:

The aim of this study is to evaluate the potential of BHB supplementation as a novel strategy to impede the development and progression of intestinal adenomas in individuals with FAP, thus potentially reducing the need for frequent upper endoscopies and colonoscopies and preventing the need for risk-reducing surgical intervention.
See Study Details

Microbial and Environmental Factors Associated with Polyps Development in Familial Adenomatous Polyposis (MicrobEnvironment in FAP)

Sponsor:

Hospices Civils de Lyon

Principal Investigator:

Study Contact

Name:

Nicolas BENECH, MD PhD

Phone:

+33426109435 ext +33

Email:

nicolas.benech@chu-lyon.fr

Study Description:

Familial adenomatous polyposis (FAP) is an autosomal dominant inherited disorder linked to a mutation in the APC gene, associated with the development of multiple colonic and duodenal adenomas, which in 100% of cases progress to colorectal cancer (CRC) if left untreated. Management of affected patients is usually based on prophylactic total colectomy with or without rectal preservation, followed by regular endoscopic surveillance of the duodenum and rectum or ileal reservoir. However, there is considerable inter- and intra-familial variability in the rate of adenoma appearance and development for identical mutations. This strongly suggests the additional role of environmental factors. Recently, the gut microbiota has been identified as a co-factor of carcinogenesis in patients with FAP, but no prospective evaluation of the association between the incidence and severity of adenomatous proliferations and a microbiological signature has been studied, particularly at duodenal level in operated patient.
See Study Details

Nirogacestat in Premenopausal Females With Desmoid Tumor/​Aggressive Fibromatosis (DT/​AF)

Sponsor:

SpringWorks Therapeutics, Inc.

Principal Investigator:

Winette van der Graff, MD, The Netherlands Cancer Institute

Study Contact

Name:

Nicole H Leedom

Phone:

984-204-8065

Email:

clinical@springworkstx.com

Study Description:

This study is being conducted to study how nirogacestat may affect the ovarian function of adult premenopausal women with progressing desmoid tumors/aggressive fibromatosis.
See Study Details

Observing People With Desmoid-Type Fibromatosis

Sponsor:

Memorial Sloan Kettering Cancer Center

Principal Investigator:

Aimee M Crago, MD, PhD, Memorial Sloan Kettering Cancer Center

Study Contact

Name:

Aimee M Crago, MD, PhD

Phone:

212-639-4807

Email:

cragoa@mskcc.org

Study Description:

The purpose of this study is to closely observe people with desmoid-type fibromatosis over 1 months.
See Study Details

Pancreas Registry and High Risk Registry

Sponsor:

Icahn School of Medicine at Mount Sinai

Principal Investigator:

Aimee Lucas, MD, MS, Icahn School of Medicine at Mount Sinai

Study Contact

Name:

Joyce Serebrenik

Phone:

(212) 241-7269

Email:

joyce.serebrenik@mountsinai.org

Study Description:

The purpose of this study is to establish a registry of patients with pancreatic diseases. Patients included in the registry may include those with: pancreatic cancer, precancerous lesions of the pancreas, inflammatory lesions of the pancreas, cystic lesions of the pancreas, and patients at high-risk of pancreatic cancer such as those with a family history of pancreatic cancer or with a family history of a syndrome known to be associated with pancreatic cancer. Pancreatic cancer is the fourth leading cause of death from cancer in the United States. However, little is known about the development of pancreatic cancer and pancreatic diseases in individuals with the above conditions. Knowledge of how family history, environmental exposures, and inflammatory lesion of the pancreas contribute to the development of pancreatic cancer and pancreatic diseases is essential.
See Study Details

Phase 3 Trial of eRapa in Patients With Familial Adenomatous Polyposis

Sponsor:

Rapamycin Holdings Inc.

Principal Investigator:

Vance Sohn, MD, LumaBridge

Study Contact

Name:

Amy Ellenberger

Phone:

210-346-8330

Email:

210-346-8330

Study Description:

The main goal of this clinical trial is to learn if the drug eRapa works to slow down the progression of disease in patients diagnosed with Familial Adenomatous Polyposis (FAP). Researchers will compare eRapa to Placebo. The questions to be answered by this trial are:
  • Does taking eRapa help to slow down the progression of the disease in patients with FAP?
  • Is eRapa a safe treatment for patients diagnosed with FAP?
  • What is the effect of eRapa on the number of polyps found in GI tract of patients diagnosed with FAP?
  • How does treatment with eRapa affect a patient's quality of life?
See Study Details

Project: Every Child for Younger Patients With Cancer

Sponsor:

Children's Oncology Group

Principal Investigator:

Study Contact

Name:

Phone:

Email:

Study Description:

This study gathers health information for the Project: Every Child for younger patients with cancer. Gathering health information over time from younger patients with cancer may help doctors find better methods of treatment and on-going care.
See Study Details

Radiomics Compared With Conventional Response Criteria for Predicting Progression of Desmoid Tumor After Cryoablation (Cryomics)

Sponsor:

Istituto Ortopedico Rizzoli

Principal Investigator:

Study Contact

Name:

Phone:

Email:

Study Description:

Desmoid tumors (DT) are uncommon tumors that arise from musculoaponeurotic structures. Despite benign, they can cause pain and disability due to their tendency to be locally aggressive. Cryoablation, a technique used in interventional radiology, has gained popularity in recent years as a treatment option for sporadic DT. This involves repeated cycles of freezing, leading to cell death. Recent studies showed that percutaneous image-guided cryoablation appears to be safe and effective for local control for patients with extra-abdominal desmoid tumors.Although changes in the heterogeneity of tumors are commonly known, they are often ignored in response criteria that only evaluate tumor size in a single dimension, such as Response Evaluation Criteria in Solid Tumors (RECIST 1.1). Nevertheless, MRI can reveal early changes in tumor heterogeneity in responding tumors, resulting from a reduction in cellular area and an increase in fibro-necrotic content, before any dimensional changes occur. These changes in heterogeneity can be quantified using a radiomics approach. The aim of this study is to develop radiomics response criteria dedicated to the evaluation of DT treated with cryoablation as a first line treatment and to compare their performance with those of alternative radiologic response criteria for predicting progression according to RECIST 1.1.
See Study Details

Safety and Efficacy of Tegavivint in Patients With Metastatic Colorectal Carcinoma

Sponsor:

HonorHealth Research Institute

Principal Investigator:

Carol Carol Guarnieri, RN, MSN, FNP-BC

Study Contact

Name:

Phone:

833-354-6667

Email:

clinicaltrials@honorhealth.com

Study Description:

This trial will evaluate the safety, tolerability, and preliminary efficacy of tegavivint as monotherapy (single) and in combination with standard therapies in patients with metastatic colorectal carcinoma (mCRC).
See Study Details

Safety and Efficacy Study Using 5-ALA Oral Administration as an Adjuvant Therapy on the Rate of Local Tumor Recurrence in Patients Who Have Desmoids Tumors

Sponsor:

michal roll

Principal Investigator:

Jacob Bickels, MD/PhD, Tel-Aviv Sourasky Medical Center

Study Contact

Name:

Jacob Bickels, MD/PhD

Phone:

+972-524266341

Email:

jACOBB@TLVMC.GOV.IL

Study Description:

The purpose of this study is to evaluate the efficacy of preoperative 5-ALA oral administration and subsequently intraoperative tumor bed phototherapy with red light laser, as an adjuvant therapy on the 3 years rate of local tumor recurrence in patients with desmoid tumors. To evaluate the Safety of 5-ALA administration. 5 years local recurrence rate.
See Study Details

Safety Study for the Use of Rapamycin in Children With Familial Adenomatous Polyposis (RAPA-4-PAF)

Sponsor:

University Hospital, Toulouse

Principal Investigator:

Study Contact

Name:

Emmanuel Mas, Pr

Phone:

+33 5 34 55 84 45

Email:

mas.e@chu-toulouse.fr

Study Description:

The hypothesize of this research is that rapamycin is effective and well-tolerated in teenagers with familial adenomatous polyposis (FAP). Rapamycin could be effective in blocking the formation of adenomas and/or their evolution by decreasing their size and number. Researchers aim to assess the safety profile of rapamycin in FAP adolescents using a 2 low dose regimen.
See Study Details

Study of Cryoablation and Nirogacestat for Desmoid Tumor

Sponsor:

Nam Bui, M.D., Stanford University

Principal Investigator:

Study Contact

Name:

Priyanka Reddy

Phone:

(650) 497-8288

Email:

reddyp@stanford.edu

Study Description:

The primary purpose of this protocol is Systemic therapy with oral study agent, nirogacestat, followed by a single cryoablation procedure.
See Study Details

Talimogene Laherparepvec, Nivolumab and Trabectedin for Sarcoma (TNT)

Sponsor:

Sarcoma Oncology Research Center, LLC

Principal Investigator:

Study Contact

Name:

Victoria Chua

Phone:

310-552-9999

Email:

vchua@sarcomaoncology.com

Study Description:

This is a Phase 2 study using talimogene laherparepvec, nivolumab, and trabectedin as first, second or third line therapy for advanced sarcoma, including desmoid tumor and chordoma.
See Study Details

Tegavivint for the Treatment of Recurrent or Refractory Solid Tumors, Including Lymphomas and Desmoid Tumors

Sponsor:

Sarcoma Oncology Research Center, LLC

Principal Investigator:

Sant P Chawla, MD, Sarcoma Oncology Center

Study Contact

Name:

Victoria Chua

Phone:

310-552-9999

Email:

vchua@sarcomaoncology.com

Study Description:

This is a Phase 2 study using talimogene laherparepvec, nivolumab, and trabectedin as first, second or third line therapy for advanced sarcoma, including desmoid tumor and chordoma.
See Study Details

Tegavivint for the Treatment of Recurrent or Refractory Solid Tumors, Including Lymphomas and Desmoid Tumors

Sponsor:

Children's Oncology Group

Principal Investigator:

Sarah B Whittle,Pediatric Early Phase Clinical Trial Network

Study Contact

Name:

Phone:

Email:

Study Description:

This phase I/II trial evaluates the highest safe dose, side effects, and possible benefits of tegavivint in treating patients with solid tumors that has come back (recurrent) or does not respond to treatment (refractory). Tegavivint interferes with the binding of beta-catenin to TBL1, which may help stop the growth of tumor cells by blocking the signals passed from one molecule to another inside a cell that tell a cell to grow.
See Study Details

Ten Versus Fifteen Centimeter Pouch in IPAA Surgery (TESTIMONY)

Sponsor:

Odense University Hospital

Principal Investigator:

Study Contact

Name:

Anders Mark-Christensen, MD, PhD

Phone:

+45 51236691

Email:

anders.mark.christensen2@rsyd.dk

Study Description:

The aim of this randomized controlled trial is to compare outcome after construction of an ileal (J-shaped) reservoir of 10 versus 15 centimeters in primary ileal pouch-anal anastomosis surgery.
See Study Details

Testing for Safety and Colorectal Cancer Preventive Effects of ONC201

Sponsor:

National Cancer Institute (NCI)

Principal Investigator:

Alexander G Raufi, Rhode Island Hospital

Study Contact

Name:

Phone:

Email:

Study Description:

This phase I trial tests the safety, side effects, and best dose of ONC201 in preventing colorectal cancer in patients with familial adenomatous polyposis (FAP) or a history of multiple polyps. ONC201 may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth.
See Study Details

Treatment of Desmoid Fibromatosis With Arterial Embolization (TAE-DESMO)

Sponsor:

Istituto Ortopedico Rizzoli

Principal Investigator:

Study Contact

Name:

Giancarlo Facchini, Medicine and Surgery

Phone:

Giancarlo Facchini, Medicine and Surgery

Email:

Study Description:

Desmoid fibromatoses are rare and locally aggressive mesenchymal tumors. The current scientific evidence regarding the efficacy and safety of the treatment of desmoid fibromatosis by arterial embolization is constituted by several retrospective and prospective studies. These studies report promising results through the use of chemoembolization, that is, arterial embolization using particles loaded with chemotherapy. Instead, the type of treatment we propose would consist of injection of embolizing material without the use of chemotherapy, based on the positive results we have consistently reported over the years on arterial embolization of musculoskeletal tumors.
See Study Details

Trial of Exercise Therapy in Familial Adenomatous Polyp (FAP)

Sponsor:

University of Michigan Rogel Cancer Center

Principal Investigator:

Samara Rifkin, University of Michigan Rogel Cancer Center

Study Contact

Name:

Phone:

Email:

Study Description:

The study intervention being investigated in this phase 1a/b trial is exercise therapy. The form of exercise therapy will be aerobic exercise therapy comprised of supervised moderate-intensity treadmill walking. The primary objective of this study is to identify the most appropriate level (the recommended phase 2 dose; RP2D) of exercise therapy for investigation in larger trials. To identify the RP2D of exercise therapy we will conduct a phase 1a level-finding trial and a phase 1b level-expansion trial. The phase 1a study is a level escalation trial evaluating 3 exercise levels (150, 225, and 300 minutes per week), with one de-escalation level of 90 minutes per week, if required. The phase 1b trial will further evaluate the highest feasible level and one LEVEL below identified in the phase 1a study.
See Study Details

Scientific Publications

Just like in many rare conditions, there just isn’t a lot that we know about our disease. However, research is always ongoing and although the pace is slower than anyone would like, progress is being made. We are always looking at research articles that may shed light on the condition we live with.  Thanks to continued research being done, we have a robust and growing list of publications that you may find useful.

The WHO Classification of Genetic Tumor Syndromes: Considerations for Genetics
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Extracolonic Manifestations of Lynch Syndrome and Familial Adenomatous Polyposis
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Ricks, Benefits, and Effects of Management for Biopsy of the Papilla in Patients with Familial Adenomatous Polyposis
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Endoscopic Surveillance and Treatment of Upper GI Tract Lesions in Patients with Familial Adenomatous
Polyposis—A New Perspective on an Old Disease
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Risk factors and protective measures for desmoid tumours in familial adenomatous polyposis: retrospective cohort study
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Mosaicism in Patients with Colorectal Cancer or Polyposis Syndromes: A Systemic Review
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Familial adenomatous polyposis: non-surgical management of large bowel disease: endoscopic and chemoprevention strategies
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Molecular Pathways of Carcinogenesis in Familial Adenomatous Polyposis
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Incidental Finding of Attenuated Familial Adenomatous Polyposis
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Genotype–phenotype correlation for extracolonic aggressive phenotypes in patients with familial adenomatous polyposis
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Precancerous lesions of the stomach, gastric cancer and hereditary gastric cancer syndromes
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Pediatric Cancer Predisposition and Surveillance Update: Summary Perspective and Future Directions
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Long-Term, Prospective Assessment of Cancer Risk in APC C.3920T>A (I1307K) Carriers: Evidence From a Cohort of Over 21,000 Healthy Individuals
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Ubiquitous neurocognitive dysfunction in familial adenomatous polyposis: proof-of-concept of the role of APC protein in neurocognitive function
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Paired somatic-germline testing of 15 polyposis and colorectal cancer-predisposing genes highlight the role of APC mosaicism in de novo familial adenomatous polyposis
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Surveillance for patholoty associated with cancer on endoscopy (SPACE): criteria to identify high-risk gastric polyps in familial adenomatous polyposis
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Progression of Nodular Thyroid Disease in Familial Adenomatous Polyposis Syndrome: Refined Surveillance Recommendations
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Prevalence and Consequences of APC Mosaicism in Patients with Colorectal Adenomas
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