Skip to main content

Clinical Trials

The trials listed here are being conducted by pharmaceutical companies and physicians who are partnering with or have contacted the Gorlin Syndrome Alliance.

For a complete listing, please go to clinicaltrials.gov.

For more information on this clinical trial, including on inclusion and exclusion criterion, please see the following resources:



Questions about Gorlin syndrome that are not related to this clinical trial should be directed to info@gorlinsyndrome.org or call 267-689-6443

Further information on this trial will be provided as soon as it becomes available.

Please consider becoming a hero to the Gorlin syndrome community by participating in this clinical trial.

 

All USA Locations:

CURRENT CLINICAL TRIAL OPPORTUNITY

“Efficacy and Safety of Patidegib Gel 2% for Preventing Basal Cell Carcinomas  on the Face of Adults with Gorlin Syndrome”

TRIAL:  

Clinical trial available now for topical gel to prevent basal cell skin cancers (BCCs) in people with Gorlin syndrome. 

START DATE:  

Ongoing at 30 sites worldwide

ELIGIBILITY REQUIREMENTS:

These include the following:

  • Age 18 or over
  • PTCH1 mutation as the drug works best on these people. Free genetic testing will be done at the screening visit if individual meets requirements noted below.
  • 10 or more BCCs on your face when you are screened. Specialized, high-powered photography equipment is used to identify the lesions.
  • Oral hedgehog inhibitors (Odomzo (sonidegib) or Erivedge (vismodegib)) must be stopped for 3 months prior to first visit.
  • Site visits needed: Potential participants will need to go to their chosen clinical trial site for a screening visit. If this is successful, five more in-person site visits will be needed over the course of 12 months. Virtual phone or video visits will also be necessary.
  • For more details, please go to: clinicaltrials.gov

LOCATIONS: 

30 sites worldwide, over half across the United States. See below for a detailed site list with contact information. 

EXPENSES:

All costs associated with your travel will be reimbursed fully. This includes air/bus/train fare, gas and tolls, meals, and overnight lodging as necessary. If a care partner is needed, this individuals’ expenses will be covered as well.

BENEFITS: 

  • If an individual completes the trial and the medication is FDA approved, this participant will receive the medication FREE for one year.
  • With success and FDA approval, we will have a non-surgical, non-invasive preventative therapy for BCCs in the future! YOU will have been a part of creating this opportunity for all adults with Gorlin syndrome. 
  • Free Genetic Testing (if not previously confirmed) for participants to document PTCH1 mutation.

FOR MORE INFORMATION:  

  • Information on this trial is also available in a webinar recorded in June of 2024 featuring Dr. Ervin Epstein and Julie Breneiser, Executive Director.

11-1200x900

 

North East

Dr. JaiDe (Jeff) Yu

Location:
Massachusetts General Hospital
Clinical Unit for Research Trials and Outcomes in Skin
50 Staniford Street, Suite 240
Boston, MA 02114

Contact Information –
Trial Coordinator: Anicka Lawrence

Email:
alawrence6@mgh.harvard.edu

Phone numbers
Office: 617-726-5066
Fax: 617-724-2998 


Dr. Kristin Bibee
Location:
The Johns Hopkins Hospital
The Johns Hopkins Outpatient Center
601 N. Caroline Street
8th Floor, Suite 8033
Baltimore, MD 21287

Contact Information –
Trial Coordinator:
Manager: Ruizhi Wang
Coordinator: Yage Sun

Email:
rwang@jmmi.edu
yun147@jh.edu

Phone number:
Office: 410-502-7546


Dr. Liz Billingsley

Location:
Penn State Hershey Medical Center
Penn State Health
500 University Drive
Dermatology Research UPC II, Room 2010
Hershey, PA 17033

Contact Information –

Trial Coordinator:
Samantha Gettle

Email:
sgettle2@pennstatehealth.psu.edu

Phone number:
Office: 717-531-4439
Fax: 717-531-5088

Dr. Robert Nossa

Location:
Schweiger Dermatology P.C.
60 Pompton Ave.
Verona, NJ 07044

Contact Information –

Trial Coordinator:
Malgorzata Lasoche Lopez

Email:
malgorzata.lopez@schweigerderm.com

Phone number:
Office: 929-547-0508
Fax: 973-239-8812


Dr. Sean Christensen

Location:
Yale University School of Medicine
Yale Center for Clinical Investigation
2 Church Street South
Suite 115
New Haven, CT 06519

Contact Information –

PI: Dr. Sean Christensen
Study CoordinatorNicole Olszewski

Email: nicole.olszewski@yale.edu

Phone: 203-785-5505


Dr. Anthony Rossi

Location:
Memorial Sloan Kettering Cancer Center
1275 York Ave
New York, NY 10065

Contact Information –

PI: Dr. Anthony Rossi
Study CoordinatorShanti Persaud

Email: mangarl@mskcc.org

Phone: 646-820-9942

South East

Dr. Meenal Kheterpal

Location:
Duke Dermatology
Duke University School of Medicine
40 Duke Medicine Circle
Durham, NC 27710

Contact Information –

Trial coordinator:
Connor Whatley & Kristy Averette
Clinical Research Nurse Coordinator

Email: connor.whatley@duke.edu
Kristy.averette@duke.edu

Phone number:
Office: 919-681-8368


Dr. Cheryl Hull

Location:

Northwest Arkansas Clinical Trials Center, PLLC
599 S. Horsebarn Rd.
Suite 200
Rogers, AR 72758

Contact Information 

Trial coordinator:
Briana Tedford, B.S.

Email: brianahullderm@yahoo.com

Phone numbers
Office: 479-876-8205, Ext. 4
Fax: 479-876-8049

Dr. James Grichnik

Location:
University of South Florida
Department of Dermatology
13330 USF Laurel Drive
Tampa, FL 33612

Contact Information –

Trial coordinator:
Lucy Lam RN, MSMS, CCRC
Email:
llam@usf.edu

Phone number:
Office: 813-974-8249


Dr. Armand Cognetta

Location:
Dermatology Associates of Tallahassee, P.A.
1707 Riggins Road
Tallahassee, FL 32308

Contact Information –

Trial coordinator:
Anna Kaji

Email: akaji@datfi.com

Phone number
Office: 805-728-7931

Mid West

Dr. Steve Kempers

Location:
Minnesota Clinical Study Center
119 14th Street NW
Suite 250
New Brighton, MN 48109

Contact Information –

Trial Coordinator:
Jenjira Skrei

Email:
jskrei@associatedskincare.com

Phone number:
Office:
763-571-4200


Dr. Jose Garcia-Zuazaga

Location #1:
Apex Clinical Research Center
29111 Cedar Road
Mayfield Heights, OH 44124

Contact Information –

Trial coordinator:
Brooke Glivar, LPN, CCRC
Research Site Manager

Email: BGlivar@apexskin.com

Phone numbers:
Cell: 330-933-2180
Office:440-940-2739


Dr. Jose Garcia-Zuazaga

Location #2:
Apex Clinical Research Center
Apex skin Corporate Office
4124 Munson Street
Canton, OH 44718

Contact Information –

Trial coordinator:
Theresa Sedlak-Hanslik, LPN, CCRC
Research Site Manager

Email: BGlivar@apexskin.com

Phone numbers:
Cell: 330-933-2180
Office:440-940-2739


Dr. Diana Bolotin

Location:
Department of Medicine
Section of Dermatology
5841 S. Maryland Ave.
Chicago, Il 60637

Contact Information –

Trial Coordinator:
Breanna Bertacchi

Email: bbertacchi1@bsd.uchicago.edu

Phone number:
Office: 773-702-7696

Dr. Melody Stone

Location:
MediSearch Clinical Trials
1427 Village Drive
St. Joseph, MO 64506

Contact Information –
Trial coordinator:
Healthier Jackson

Email:
Heather.Jackson@medisearchderma.com

Phone number:
Office: 816-364-1515


Dr. Mio Nakamura

Location:
University of Michigan Medicine
Department of Dermatology
1618 Taubman Center
1500E. Medical Center Drive
Ann Arbor, MI 48109

Contact Information –
Trial Coordinator:
Nicole Mahn

Email:
dermtrials@med.umich.edu

Phone number:
Office: 734-232-0562


Dr. Christine Poblete-Lopez

Location:
Cleveland Clinic – Main Campus
9500 Euclid Ave
Cleveland, OH 44195

Contact Information –
PI: Dr. Christine Poblete-Lopez
Study CoordinatorBeverly Doyle

Email: doyleb4@ccf.org

Phone number: 216-636-1196

South West

Dr. Timothy Rodgers

Location:
North Texas Center for Clinical Research
3880 Parkwood Blvd, Suite 102
Frisco, TX 75034

Contact Information –

Trial Coordinator:
Ashlyn Vallejo

Email: ashlyn@ntxclinicalresearch.com

Phone numbers:
Cell: 214-618-0220
Office: 940-315-5626


Dr. Lenny Henderson

Location:
SSM Health Dermatology
608 NW 9th Street, Suite 5000
Oklahoma City, OK 73102

Contact Information –

Trial coordinator:
Jessica Lackey

Email: jessica@hightowerclinical.com

Phone number:

Office: 405-579-8331

Dr. Michael Migden

Location:
The University of Texas MD Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030


Contact Information –

PI: Dr. Michael Migden
Study CoordinatorNitzia Quilantan Barragan

Email: NEQuilantan@mdanderson.org

Phone: 713-834-7768

West

Dr. Olivia Lucero

Location:
Oregon Health & Science University
SW Bond Ave
Portland, OR 97239

Contact Information –

Trial coordinator:
Marisa Jingco
Rachel Morimoto

Email: jingco@ohsu.edu

Phone number:
Office: 503-418-9078


Dr. Michelle Aszterbaum

Location:
Dermatology Center of Newport
360 San Miguel Dr Suite 406,
Newport Beach, CA 92660

Contact Information –

Trial coordinator:
Hannah Walton

Email:
hew2018@gmail.com

Phone number:
Cell: 203-564-0030


Dr. Kavita Sarin

Location:
Stanford University School of Medicine – Department of Dermatology
455 Broadway St. Discovery Hall 1st Fl.
Redwood City, CA 94063

Contact Information:

Trial coordinator:
Dom Mitchell

Email:
domcm@stanford.edu

Phone number:
Office: 650-721-7192
Fax: 650-498-5908

Dr. Sunil Dhawan

Location:
Center for Dermatology Clinical Research, Inc.
2557 Mowry Ave., Suite 34
Fremont, CA, USA 94538

Contact Information –

Trial coordinator:
Leanne Saud, MA

Email: leannes@ctr4derm.com

Phone number:
Office: 510-797-0140, Ext. 5


Dr. April Armstrong

Location:
University of California Los Angeles
911 Broxton Ave., 3rd Floor
Los Angeles, CA 90024

Contact Information:

Trial coordinator:
Peggy Chou

Email:
PChou@mednet.ucla.edu

Phone numbers
Cell: 951-256-7538