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Clinical Trials Research

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Observational and interventional medical research programs that are currently looking for patients with specific diseases or conditions or related health profiles who are willing to volunteer to help determine the safety, effectiveness, dosage requirements and side effects of new drugs, medical products or techniques. (AIRS LT-1530.1550)

Cure SMA View on Map
925 Busse Road
Elk Grove Village, IL 60007
 Phone: 800-886-1762
Service Categories:
Address:
925 Busse Road
Elk Grove Village, IL 60007
Phone: 800-886-1762
Toll Free Phone: 800-886-1762
Service Categories:
Clinical Trials Research
Medical Equipment/Supplies
National Support Services, Disab/Diag
Email: info@curesma.org
URL: https://www.curesma.org/
Eligibility: Individuals with spinal muscular atrophy (SMA)
Services Provided: Funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides families the support they need. Local and national programs. An equipment pool loans medical equipment free of charge. Annual conference.

Web-based location finder for support in your area.
Source: MHP-Nationwide
Last Updated: 9/25/2019
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SPARK Autism Research, Simons Foundation View on Map
PO Box 1806
New York, NY 10159
Service Categories:
Organization Name: Simons Foundation
(Show others in Organization)
Address:
PO Box 1806
New York, NY 10159
Service Categories:
Clinical Trials Research
Email: info@SPARKforAutism.org
URL: https://www.sparkforautism.org/
Services Provided: SPARK works with research partners from all over the world to engage families and adults with autism in research studies. All of the studies are evaluated for scientific merit, and a SPARK scientific committee approves them. SPARK matches participants with research studies based on characteristics such as age, diagnosis, medical history, location and more. Some of these studies are online, and some are in person.

SPARK does not share any information with researchers until participants give their permission. Participants in SPARK are always in control.
Provider Profiles: Simons Foundation Powering Autism Research for Knowledge (SPARK)
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Right to Try Foundation View on Map
5442 South 900 East
Salt Lake City, UT 84117
 Phone: 385-722-2266
Service Categories:
Address:
5442 South 900 East
Salt Lake City, UT 84117
Phone: 385-722-2266
Service Categories:
Clinical Trials Research
Medical Care Expense Assistance
Email: iorg.alex@gmail.com
URL: http://www.righttotryfoundation.com/
Eligibility: Terminally ill Utah patients with household income of $75,000 or less who meet the access criteria of the legislation.
Services Provided: Provides financial assistance for terminally ill patients by purchasing lifesaving drugs still in the FDA approval process.

A bill passed in March 2015, HB 94, gives terminally ill Utahns access to experimental drugs not yet approved by the FDA.
Source: Medical Home Portal
Last Updated: 11/2/2020
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Pancreatic Cancer Action Network View on Map
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
 Phone: 310-725-0025
Service Categories:
Address:
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Toll Free Phone: 877-573-9971
Fax: 310-725-0029
Service Categories:
Clinical Trials Research
Disability Awareness Programs
Specialized Information Resources
Email: info@pancan.org
URL: https://www.pancan.org/
Eligibility: Cancer patients, survivors, and their families
Services Provided: Provides research, patient support, community outreach, and government advocacy. Raises money for direct private funding of research. Supports individuals and communities all across the country in working together to raise awareness and funds to develop more effective treatment options for better patient outcomes. The programs aims to create a sense of hope and community so no one has to face pancreatic cancer alone.

  • Specialized Information and Referral
  • Clinical Trials
  • Disease/Disability Information
Source: Nationwide Suggest Providers Queue
Last Updated: 10/15/2020
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JBR Clinical Research View on Map
650 East 4500 South Ste 100
Salt Lake City, UT 84107
 Phone: 801-261-2000
Service Categories:
Address:
650 East 4500 South Ste 100
Salt Lake City, UT 84107
Phone: 801-261-2000
Fax: 801-261-4539
Service Categories:
Clinical Trials Research
Email: participate@jbrutah.com
URL: https://www.jbrclinicalresearch.com/
Eligibility: Varies with each study. Call for current details.
Services Provided: Jean Brown Research conducts various clinical research trials sometimes including immunizations or baby formula trials. Compensation for time and travel may be provided.

  • Clinical Trials
Source: Help Me Grow Utah via United Way 2-1-1
Last Updated: 11/25/2020
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Center for Personalized Medicine, Intermountain Primary Children's Hospital / University of Utah Health
81 North Mario Capecchi Drive
Salt Lake City, UT 84113
Service Categories:
Organization Name: Intermountain Primary Children's Hospital / University of Utah Health
(Show others in Organization)
Address:
81 North Mario Capecchi Drive
Salt Lake City, UT 84113
Service Categories:
Clinical Trials Research
Pediatric Genetics
Email: joshua.bonkowsky@hsc.utah.edu
URL: https://intermountainhealthcare.org/primary-childrens/programs-specialties/personalized-medicine
Services Provided:

Provides personalized genetic therapies and therapy development, including rapid genetic testing and research on whole genome sequencing.

Initial efforts are focused on providing answers to critically-ill infants in the newborn intensive care unit, and children with severe seizures and heart conditions.
Provider Profiles:

Josh Bonkowsky, MD, PhD- Director
Source: Medical Home Portal
Last Updated: 12/9/2020
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National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health View on Map
3 Information Way
Bethesda, MD 20892-3580
 Phone: 800-860-8747
Service Categories:
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
TDD: 866-569-1162
Service Categories:
Clinical Trials Research
Education About Disabilities/Diagnoses
Specialized Information Resources
Email: healthinfo@niddk.nih.gov
URL: https://www.niddk.nih.gov/
Eligibility: Contact for specific information.
Services Provided:

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.
Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
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The Spinal Cord Injury Project Rutgers University View on Map
604 Allison Road D-251
Piscataway, NJ 08854
 Phone: 848-445-9553
Service Categories:
Address:
604 Allison Road D-251
Piscataway, NJ 08854
Phone: 848-445-9553
Fax: 732-445-2063
Service Categories:
Clinical Trials Research
URL: https://keck.rutgers.edu/
Services Provided: Seeks the rapid movement of therapies from laboratory to clinical trial. This includes research to test and confirm the efficacy and safety of promising therapies, training of laboratories to do spinal cord injury research and animal care, and community outreach/education. Home of Wise Young and the CareCure community.

Clinical Trials Research Projects
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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Utah Leukodystrophy Program, University of Utah Health / Intermountain Primary Children's Hospital
81 North Mario Capecchi Drive
Salt Lake City, UT 84113
 Phone: 801-213-3599
Service Categories:
Organization Name: University of Utah Health / Intermountain Primary Children's Hospital
(Show others in Organization)
Address:
81 North Mario Capecchi Drive
Salt Lake City, UT 84113
Phone: 801-213-3599
Fax: 801-587-7539
Service Categories:
Clinical Trials Research
Pediatric Neurology
Email: joshua.bonkowsky@hsc.utah.edu
URL: https://healthcare.utah.edu/pediatrics/programs-services/neurology/leukodystrophy.php
Languages Spoken: German
Eligibility: Requests for referrals should be initiated by contacting Dr. Bonkowsky (joshua.bonkowsky@hsc.utah.edu) or Emily Hardy (emily.hardy@hsc.utah.edu or 801-213-7701).
Services Provided:

Provides evaluation, diagnosis, and treatment of inherited leukodystrophies (including adrenomyeloneuropathy) for:

  • prenatal and pregnancy counseling,
  • newborns,
  • children,
  • adolescents, and
  • adults

If families are interested, they can enroll in the Western Leukodystrophy Project, one of the largest longitudinal studies of children with leukodystrophies.

The Leukodystrophy Clinic is also a Leukodystrophy Care Network Certified Center, meeting or exceeding the Criteria for LCN Center Certification.
Provider Profiles:

Josh Bonkowsky, MD, PhD

See website or contact for additional provider names and specialties. All providers may not provide all services.
Source: Medical Home Portal
Last Updated: 1/5/2021
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