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)

Service Legend
Local Service
Statewide Service: Provides online resources, telehealth, or service at a satellite office.
Nationwide Service: Provides online resources, telehealth or services at a regional/national headquarters location.
Statewide Provider
5442 South 900 East
Salt Lake City, UT 84117
Phone: 385-722-2266
Statewide Provider
Address:
5442 South 900 East
Salt Lake City, UT 84117
Phone: 385-722-2266
Email: iorg.alex@gmail.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
650 East 4500 South Ste 100
Salt Lake City, UT 84107
Phone: 801-261-2000
Address:
650 East 4500 South Ste 100
Salt Lake City, UT 84107
Phone: 801-261-2000
Fax: 801-261-4539
Service Categories:
Email: participate@jbrutah.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
81 North Mario Capecchi Drive
Salt Lake City, UT 84113
Phone: 801-213-7701
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
Phone: 801-213-7701
Fax: 801-587-7539
Email: joshua.bonkowsky@hsc.utah.edu
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: 4/22/2022
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
Email: joshua.bonkowsky@hsc.utah.edu
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: 4/22/2022
Nationwide Provider
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Nationwide Provider
Address:
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
Fax: 301-951-6378
Services Provided:

Works to cure cystic fibrosis and provide all people with CF the opportunity to lead long, fulfilling lives. Conducts research on cystic fibrosis.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.

Source: MHP-Nationwide
Last Updated: 11/24/2022
Nationwide Provider
3015 East New York Street, Suite A2 #285
Aurora, IL 60504
Nationwide Provider
Address:
3015 East New York Street, Suite A2 #285
Aurora, IL 60504
Toll Free Phone: 800-432-6435
Fax: 630-978-7408
Email: info@angelman.org
Services Provided:

Provides resources and support for individuals and families living with Angelman Syndrome. Offers a Family Resource Team to help find needed resources; educational programs and Angelman Syndrome Resources. 

Angelman Collaborative Research Partnership- notes two studies, one related to identifying biomarkers that could be used to assess the effects of drugs on AS and the other evaluating measures and technologies related to problems areas such as sleep, communication, and brain activity.

Angelman Syndrome Foundation Contact Registry- asks for contact and demographic data for individuals with Angelman syndrome and their families so they can: notify potential participants about Angelman research trials and alert families about recent events and research findings.

Source: MHP-Nationwide
Last Updated: 9/8/2022
Nationwide Provider
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Nationwide Provider
Organization Name: National Organization for Rare Disorders
(Show others in Organization)
Address:
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Fax: 203-263-9938
Eligibility:

Persons with a rare disease and in financial need.

Services Provided:

Provides assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. Programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials.

Source: MHP-Nationwide
Last Updated: 11/24/2022
Nationwide Provider
8737 Colesville Road, Suite 400
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Nationwide Provider
Address:
8737 Colesville Road, Suite 400
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Toll Free Phone: 800-225-6872
Fax: 301-562-9870
Email: info@tsalliance.org
Services Provided:

Provides support and resources to improve the lives of people with tuberous sclerosis complex (TCS). Website identifies TSC Clinics, a TSC Clinic Screening Tool, and a locator for local resources. Conducts research on cerebral palsy.

Source: MHP-Nationwide
Last Updated: 11/24/2022
Nationwide Provider
9000 Rockville Pike
Bethesda, MD 20982
Nationwide Provider
Organization Name: National Institutes of Health Common Fund
(Show others in Organization)
Address:
9000 Rockville Pike
Bethesda, MD 20982
Toll Free Phone: 844-746-4836
Email: UDN@hms.harvard.edu
Services Provided:

Undiagnosed Diseases Network (UDN) is a research study that seeks to provide answers for patients and families affected by mysterious conditions. Clinical sites located throughout the U.S.

Source: MHP-Nationwide
Last Updated: 5/7/2022
Nationwide Provider
1935 County Road B2 W
Roseville, MN 55113
Phone: 415-561-8505
Nationwide Provider
Organization Name: American Association for Pediatric Ophthalmology and Strabismus (AAPOS)
(Show others in Organization)
Address:
1935 County Road B2 W
Roseville, MN 55113
Phone: 415-561-8505
Fax: 415-561-8531
Email: info@aapos.org
Services Provided:

Provides a database to find a pediatric ophthalmologist (a medical and surgical doctor who specializes in eye problems of children).

Source: MHP-Nationwide
Last Updated: 11/24/2022
Nationwide Provider
1500 Rosecrans Avenue Ste 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Nationwide Provider
Address:
1500 Rosecrans Avenue Ste 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Toll Free Phone: 877-272-6226
Fax: 310-725-0029
Email: info@pancan.org
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.COVID-19 Update: following all CDC and state guidelines.

  • Clinical Trials
  • Disease/Disability Information
  • Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
PO Box 1806
New York, NY 10159
Nationwide Provider
Organization Name: Simons Foundation
(Show others in Organization)
Address:
PO Box 1806
New York, NY 10159
Toll Free Phone: 844-547-7275
Service Categories:
Email: info@SPARKforAutism.org
Services Provided:

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: 9/10/2022
Nationwide Provider
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
Nationwide Provider
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
Email: healthinfo@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
Nationwide Provider
55 West Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 212-315-8700
Nationwide Provider
Address:
55 West Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 212-315-8700
Toll Free Phone: 800-586-4872
Services Provided:

Improving lung health and preventing lung disease through Education, Advocacy and Research. With the generous support of the public, we are "Fighting for Air." Provides asthma research.

Source: Nationwide Suggest Providers Queue
Last Updated: 11/24/2022
Cure SMA View on Map
Nationwide Provider
925 Busse Road
Elk Grove Village, IL 60007
Nationwide Provider
Address:
925 Busse Road
Elk Grove Village, IL 60007
Toll Free Phone: 800-886-1762
Email: info@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.

Services Include:

  • 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: 5/7/2022
Nationwide Provider
196 Richmond Street
Providence, RI 02903
Phone: 401-793-8950
Nationwide Provider
Organization Name: Weight Control and Diabetes Research Center
(Show others in Organization)
Address:
196 Richmond Street
Providence, RI 02903
Phone: 401-793-8950
Toll Free Phone: 1-800-606-6927
Service Categories:
Email: aalmeida1@lifespan.org
Eligibility:

Adolescents (ages 14-20) must have lost a minimum of 10 pounds as teenagers and maintained this weight loss for at least 1 year.

Services Provided:

Provides a questionnaire and interview study to learn more about adolescent weight loss and maintenance. Adolescents will complete questionnaires and a brief interview regarding their weight loss experience. Parent participation is also encouraged, but not required. Adolescents and parents will be compensated for their time.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/24/2022
Nationwide Provider
National Institutes of Health (NIH)
9000 Rockville Pike
Bethesda, MD 20892
Phone: 301-827-0905
Nationwide Provider
Organization Name: National Institute on Alcohol Abuse and Alcoholism
(Show others in Organization)
Address:
National Institutes of Health (NIH)
9000 Rockville Pike
Bethesda, MD 20892
Phone: 301-827-0905
Service Categories:
Email: NIAAASHPResearch@mail.nih.gov
Services Provided:

Conducts various alcoholism research studies at the NIH campus in Bethesda, Maryland. While participating in medical research, you will receive standard treatment for alcoholism, which includes motivational and cognitive behavior therapies; individual, group and family counseling; and an option of attending self-help groups such as AA and more.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/14/2022
Nationwide Provider
8600 Rockville Pike
Bethesda, MD 20894
Nationwide Provider
Organization Name: U. S. National Library of Medicine
(Show others in Organization)
Address:
8600 Rockville Pike
Bethesda, MD 20894
Service Categories:
Services Provided:

Provides listing of clinical trials including Angelman syndrome; anxiety in children; argininosuccinic aciduria; arginase; auditory brinstem implants in children and adolescents, biotinidase deficiency in children and adolescents, brain injuries in children; cerebral palsy; continuous positive airway pressure (CPAP); celiac disease in children; childhood absence epilepsy; childhood absence epilepsy initial treatment; childhood hearing loss; childhood adolescent miagraine prevention study (CHAMP); children and adolescents with MPS I; children with Tourette syndrome; postural orthostatic tachycardia syndrome (POTS); 22q11.2 deletion syndrome; hearing aids in children, migraine in children; positive airway pressure (PAP) in children; vilazodone in adolescents; levomilnacipran in adolescents; preterm infants; attention deficit hyperactivity disorder (ADHD); BH4/tetrahydrobiopterin; Charcot-Marie-Tooth; children with asthma; congenital hypothyroidism; Duchenne muscular dystrohies (DMD); Fabray; intellectual disabilities; myotonic type 1; neurofibromatosis (NF1); Pompe disease; and short-chain acyl-CoA dehydrogenase deficiency (SCHAD); tracheostomies; hyperphagia in Prader-Wili; XXY (Klinefelter); GERD; TBI; substance abuse; cochlear implants; congenital adrenal hyperplasia; congenital heart disease; cystic fibrosis; depression; MOMS trial for NTD; e-cigarettes; epilepsy; FASD; foster care; fragile X; headache; infantile spasms; inflammatory bowel disease; ketogenic diet; LCHAD/TFP deficiency; leukodystrophy; MCADD; malonic aciduria; maple syrup urine disease; maternal depression; methylmalonic acidemia; open/aftercare treatment for participants diagnosed with obsessive-complusive disorder; osteogenesis imperfecta; osteoporosis; otitis media with effusion; PaP; PKU; patient-specific, effective, and rational functional connnectivity trgeting for DBS in OCD; constipation; obesity; Prader-Willi syndrome; predicting treatment response in patients wtih OCD; propionic acidemia; reclaim deep brain stimulation (DBS) therapy for obsessive-compulsive disorder; Rett syndrome; seizures; SCID: sickle cell disease; smoking cessation; somatic symptom and related disorders; spina bifida; spinal cord injuries; spinal muscular atrophy; autism; complementary and alternative medicine; glactosemia; integrative health; pyruvate decarboxylase deficiency; syncope; thin film spectacle coatings to reduce light sensitivity and headaches in child and adolescent patients with migraine; transgender youth; treatment of CMV-related hearing loss; tuberous sclerosis; turner syndrome; type 1 diabetes; tyrosinemia type 1; understanding how ketamine brings about rapid improvement in OCD; very long chain acyl-CoA dehydrogenase deficiency (VLCADD); and others. Type in the term on the home page under "Find a study."

Source: Nationwide Suggest Providers Queue
Last Updated: 11/24/2022
Nationwide Provider
Ground Floor, Norwich Centre
55 King William Road
North Adelaide
Nationwide Provider
Organization Name: University of Adelaide (Australia)
(Show others in Organization)
Address:
Ground Floor, Norwich Centre
55 King William Road
North Adelaide
Service Categories:
Email: robinsonresearch@adelaide.edu.au
Services Provided:

Conducts research on cerebral palsy.

Source: MHP-Nationwide
Last Updated: 11/24/2022
Nationwide Provider
3401 Civic Center Blvd.
Philadelphia, PA 19104
Phone: 800-468-8376
Nationwide Provider
Organization Name: Children's Hospital of Philadelphia
(Show others in Organization)
Address:
3401 Civic Center Blvd.
Philadelphia, PA 19104
Phone: 800-468-8376
Service Categories:
Provider Profiles:

Conducts research on repair of myelomeningocele.

Source: MHP-Nationwide
Last Updated: 11/25/2022
Nationwide Provider
645 N Michigan Ave Suite 1100
Chicago, IL 60611
Phone: 312-503-3342
Nationwide Provider
Organization Name: Northwestern University
(Show others in Organization)
Address:
645 N Michigan Ave Suite 1100
Chicago, IL 60611
Phone: 312-503-3342
Service Categories:
Email: cprr@northwestern.edu
Services Provided:

Conducts research on cerebral palsy.

Source: MHP-Nationwide
Last Updated: 11/25/2022
Nationwide Provider
300 N. Washington St., Suite 200
Falls Church, VA 22046
Phone: 617-948-5100
Nationwide Provider
Organization Name: CenterWatch
(Show others in Organization)
Address:
300 N. Washington St., Suite 200
Falls Church, VA 22046
Phone: 617-948-5100
Toll Free Phone: 866-219-3440
Service Categories:
Services Provided:

Conducts research on cerebral palsy.

Source: MHP-Nationwide
Last Updated: 11/25/2022
Never Give Up View on Map
Nationwide Provider
27 W. Anapamu, Suite 177
Santa Barbara, CA 93101
Phone: 805-203-0334
Nationwide Provider
Address:
27 W. Anapamu, Suite 177
Santa Barbara, CA 93101
Phone: 805-203-0334
Service Categories:
Email: info@nevergiveup.org
Services Provided:

Conducts research on spinal muscular atrophy (SMA).

Source: MHP-Nationwide
Last Updated: 11/25/2022
Nationwide Provider
Biomedical Research Center (BRC)
251 Bayview Blvd, Suite 200 (NIDA)
Baltimore, MD 21224
Nationwide Provider
Address:
Biomedical Research Center (BRC)
251 Bayview Blvd, Suite 200 (NIDA)
Baltimore, MD 21224
Toll Free Phone: 800-535-8254
Service Categories:
Services Provided:

Conducts research on smoking, alcohol, and other substances.

Source: MHP-Nationwide
Last Updated: 11/25/2022
Nationwide Provider
9000 Rockville Pike
Bethesda, MD 20892
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
9000 Rockville Pike
Bethesda, MD 20892
Service Categories:
Email: DSConnect@nih.gov
Services Provided:

Conducts research on Down syndrome.

Source: MHP-Nationwide
Last Updated: 11/28/2022
Nationwide Provider
Organization Name: Cochrane
(Show others in Organization)
Address:
11-13 Cavendish Square
London
Service Categories:
Services Provided:

Provides a review of 22 trials supports early developmental intervention programs post discharge from hospital for preterm infants to improve cognitive development in the short to medium term (up to pre-school age).

Source: MHP-Nationwide
Last Updated: 11/27/2022
Nationwide Provider
P.O. Box 3006
Rockville, MD 20847
Nationwide Provider
Organization Name: National Institute of Child Health and Human Development, NIH
(Show others in Organization)
Address:
P.O. Box 3006
Rockville, MD 20847
Service Categories:
Email: NICHDInformationResourceCenter@mail.nih.gov
Services Provided:

Provides information about studies for Klinefelter syndrome. See also PMID 20014372.

Source: MHP-Nationwide
Last Updated: 11/28/2022
Nationwide Provider
10 Prince Place, Suite 203
Newburyport, MA 01950-2657
Phone: 978-462-1866
Nationwide Provider
Address:
10 Prince Place, Suite 203
Newburyport, MA 01950-2657
Phone: 978-462-1866
Service Categories:
Email: info@fraxa.org
Services Provided:

Funds research, runs scientific meetings, advises pharmaceutical companies, and provides education. Families can reach out to FRAXA for resources, guidance, referrals, and an international community of support.

Source: MHP-Nationwide
Last Updated: 12/1/2022