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.
Nationwide Provider
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Nationwide Provider
Address:
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Fax: 847-434-8000
Services Provided:

Addresses the health, safety, and well-being of all infants, children, adolescents, and young adults. See also Prevention of Pediatric Overweight and Obesity at https://publications.aap.org/pediatrics/article-abstract/112/2/424/63348/Prevention-of-Pediatric-Overweight-and-Obesity?redirectedFrom=fulltext.

Source: MHP-Nationwide
Last Updated: 12/30/2022
Nationwide Provider
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464
TDD: 301-443-8431
Toll Free Phone: 866-615-6464
Fax: 301-443-4279
Email: nimhinfo@nih.gov
Languages Spoken: Spanish
Services Provided:

Provides mental health information on the following topics: getting help, statistics, clinical trials, outreach, research, opportunities for funding, and labs at NIMH. Provides links to descriptions of clinical trials, related to numerous mental health conditions, including ADHD, anxiety, and depression.

Source: MHP-Nationwide
Last Updated: 12/29/2022
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
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Nationwide Provider
Address:
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Email: info@fabrydisease.org
Services Provided:

Provides information about Fabry disease, research and clinical trials information, funding programs, and more. See Recommended Schedule of Assessment at https://www.fabrydisease.org/images/ReferencePDFs/fabry-registry-schedule-of-assessments.pdf. Programs, include:

  • Annual conference
  • Family camp
  • Personal support
  • Research and educational information
Source: MHP-Nationwide
Last Updated: 12/27/2022
Nationwide Provider
4500 Cooper Road, Suite 204
Cincinnati, OH 45242
Phone: 513-874-3020
Nationwide Provider
Address:
4500 Cooper Road, Suite 204
Cincinnati, OH 45242
Phone: 513-874-3020
Toll Free Phone: 800-818-7388
Email: admin@rettsyndrome.org
Services Provided:

Provides the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, and clinical trials. Resources include: Care Guides, Communication, Adaptive Equipment and Funding, School and Day Programs, Adolescence, Planning for the Future. Includes research about the condition and medication trials.

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357
Nationwide Provider
Address:
30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357
Toll Free Phone: 800-223-8355
Fax: 860-676-8337
Services Provided:

A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more. Provides research studies, see https://www.cdlsusa.org/participate-in-research/.

Additional Family Resources: Medical Cards, Family Map, CoRDS Registry, CdLS Discussion Board

Provider Profiles:

M - F 8:30 - 5 ET

Source: MHP-Nationwide
Last Updated: 12/30/2022
Family Voices View on Map
Nationwide Provider
561 Virginia Rd, Bldg. 4, Suite 300
Concord, MA 01742-2727
Phone: 781-674-7224
Nationwide Provider
Address:
561 Virginia Rd, Bldg. 4, Suite 300
Concord, MA 01742-2727
Phone: 781-674-7224
Toll Free Phone: 888-835-5669
Fax: 505-872-4780
Services Provided:

Promotes quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices (a family-led organization) has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families. See Family-Centered Care Self-Assessment Tool at http://familyvoices.org/wp-content/uploads/2014/06/fcca_FamilyTool.pdf.

Provider Profiles:

Family Voices does not provide financial aid and is not a direct service provider. Contact Family Voices in your state.

Source: MHP-Nationwide
Last Updated: 12/27/2022
Nationwide Provider
4301 Wilson Boulevard, Suite 300
Arlington, VA 22203
Phone: 703-524-7600
Nationwide Provider
Address:
4301 Wilson Boulevard, Suite 300
Arlington, VA 22203
Phone: 703-524-7600
Toll Free Phone: 800-950-6264
Email: info@nami.org
Eligibility:

Available to all.

Services Provided:

NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Provides information about NAMI groups in all states, updated information about illnesses and medications, and sends out literature. Provides information about pros and cons on participating in research studies, how to protect rights as a participant.

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Nationwide Provider
Address:
120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Toll Free Phone: 800-323-7938
Fax: 212-747-0004
Email: info@ctf.org
Services Provided:

Ending neurofibromatosis through research. Patient Engagement program, meaning the inclusion of patient representatives in NF research, and the view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community. A NF Clinic Network by state. Provides a registry for all types of NF (including NF1, NF2, and schwannomatosis).

Provider Profiles:

NF Camp is the annual summer camp of the Children's Tumor Foundation, dedicated to teens and young adults living with neurofibromatosis (NF). For over 20 years we have hosted this week-long experience for teens and young adults ages 12 to 25. NF Camp takes place on the third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah. Application on CTF website.

Source: MHP-Nationwide
Last Updated: 12/29/2022
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
1600 Clifton Road
Atlanta, GA 30329-4027
Phone: 800-232-4636
Nationwide Provider
Address:
1600 Clifton Road
Atlanta, GA 30329-4027
Phone: 800-232-4636
TDD: 888-232-6348
Eligibility:

No restrictions

Services Provided:

Protects America from health, safety, and security threats, both foreign and within the U.S. Conducts critical science and provides vital information that protects the nation against dangerous health threats, and responds to emergencies when they arise. Visit website for the most up to the minute information on COVID-19.COVID-19 UPDATE: The Vaccine Finder website is a free, online service where users can search for locations that offer vaccinations. The Website was developed by CDC and partners such as clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination service. There is now a texting option and Hotline number in both English and Spanish for finding a vaccine. The Hotline number is in place to ensure that people who aren't online (as well as people who don't speak English or Spanish) have access to all the information they need.The CDC announced on August 3, 2021 a limited eviction moratorium, for renters living in communities experiencing substantial or high transmission of COVID-19, covering an estimated 80% of all US counties, and 90% of all renters through October 3, 2021. Find information about the CDC-Kaiser Permanente adverse childhood experiences (ACE) study at https://www.cdc.gov/violenceprevention/aces/about.html.

  • Communicable Disease Control
  • Vaccine Information
Source: MHP-Nationwide
Last Updated: 12/30/2022
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: 12/30/2022
Nationwide Provider
8600 Rockville Pike
Bethesda, MD 20894
Phone: 301-594-5983
Nationwide Provider
Organization Name: U.S. National Library of Medicine
(Show others in Organization)
Address:
8600 Rockville Pike
Bethesda, MD 20894
Phone: 301-594-5983
Fax: 301-402-1384
Email: custserv@nlm.nih.gov
Services Provided:

Online medical information resource directs to information to help answer health questions. Information on drugs displays an illustrated medical encyclopedia, interactive patient tutorials, and latest health news. Provides information about conditions including homocystinuria.

Source: Nationwide Suggest Providers Queue
Last Updated: 12/27/2022
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
1861 International Drive Suite 200
McLean, VA 22102
Phone: 202-747-6210
Nationwide Provider
Address:
1861 International Drive Suite 200
McLean, VA 22102
Phone: 202-747-6210
Toll Free Phone: 800-688-8765
Fax: 202-747-6208
Services Provided:

Provides awareness, education, and research to support families living with Fragile X. Provides a patient and family registry plus a longitudinal database populated by clinician- and parent-reported data from individuals living with FXS.

Source: Nationwide Suggest Providers Queue
Last Updated: 12/29/2022
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
1 Bethany Road, Building 1, Suite S
Hazlet, NJ 07730
Phone: 800-594-4585
Nationwide Provider
Address:
1 Bethany Road, Building 1, Suite S
Hazlet, NJ 07730
Phone: 800-594-4585
Toll Free Phone: 800-594-4585
Email: info@tsfusa.org
Services Provided:

Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome. See Laboratory Guideline for Turner Syndrome at https://www.nature.com/articles/gim20108.

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
Organization Name: Center for Disease Control and Prevention
(Show others in Organization)
Address:
1600 Clifton Road
Atlanta, GA 30329
Toll Free Phone: 800-232-4636
Services Provided:

Provides education for families in identifying development milestones in children from birth to 5 years old. Provides resources and supports (WIC, Early Childhood Intervention, Home-visiting, and Education Materials) for families who may have concerns and how to reach out to a local healthcare provider. See the Pediatric Developmental Screening Flowchart at https://www.cdc.gov/ncbddd/autism/documents/Screening-Chart.pdf .

Source: Nationwide Suggest Providers Queue
Last Updated: 12/29/2022
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; social determinants of health; infantile spasms; inflammatory bowel disease; ketogenic diet; LCHAD/TFP deficiency; leukodystrophy; MCADD; malonic aciduria; maple syrup urine disease; maternal depression; methylmalonic acidemia; ARPKD/CHF; 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: 12/29/2022
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:
Services Provided:

Conducts research on repair of myelomeningocele. Other study locations exist including University of California San Francisco Benioff Children's Hospitals, see https://fetus.ucsf.edu/spina-bifida-moms-trial/. 

Source: MHP-Nationwide
Last Updated: 12/30/2022
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
CenterWatch View on Map
Nationwide Provider
300 N. Washington St., Suite 200
Falls Church, VA 22046
Phone: 617-948-5100
Nationwide Provider
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:

Provides information about clinical trials for cerebral palsy, spinal cord injuries, and other conditions.

Source: MHP-Nationwide
Last Updated: 12/30/2022
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
Nationwide Provider
450 Water Street
Cambridge, MA 02141
Nationwide Provider
Organization Name: Sanofi
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Address:
450 Water Street
Cambridge, MA 02141
Toll Free Phone: 888-404-4413
Service Categories:
Services Provided:

Provides a registry for rare diseases including Fabry disease, MPS I, and others, regardless of disease type, treatment status, or treatment choice.

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
1500 Highland Avenue
Madison, WI 53705
Nationwide Provider
Organization Name: University of Wisconsin-Madison
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Address:
1500 Highland Avenue
Madison, WI 53705
Toll Free Phone: 800-965-9205
Service Categories:
Email: registry@waisman.wisc.edu
Services Provided:

Provides a registry to match individuals with Fragile X to studies. Provides database of people who want to be notified about fragile X research studies. It is a free, confidential, convenient way for families to connect with studies and move research forward.

Source: MHP-Nationwide
Last Updated: 12/27/2022
Nationwide Provider
Brisbane, Queensland
Nationwide Provider
Address:
Brisbane, Queensland
Service Categories:
Email: curator@angelmanregistry.info
Services Provided:

Provides a registry to collect data on individuals with Angelman syndrome (AS) through a series of online surveys to build the largest and most comprehensive global collection of information on AS to date; supported by AS foundations in over 20 countries. Located in Australia.

Source: MHP-Nationwide
Last Updated: 12/27/2022
Nationwide Provider
3615 Civic Center Blvd. ARC 516H
Philadelphia, PA 19140
Nationwide Provider
Address:
3615 Civic Center Blvd. ARC 516H
Philadelphia, PA 19140
Service Categories:
Services Provided:

Provides a shared research infrastructure supports collection and analysis of robust clinical data and biological specimen to pave the way for transformative therapeutic trials across the leukodystrophies.

Source: MHP-Nationwide
Last Updated: 12/27/2022
Nationwide Provider
1345 Govan Road
Glasgow
Nationwide Provider
Address:
1345 Govan Road
Glasgow
Service Categories:
Email: registry@i-dsd.org
Services Provided:

Supports research and improvement in clinical care of patients with congenital adrenal hyperplasia.

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
Organization Name: National Institutes of Health
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Address:
Building 31
31 Center drive
Bethesda, MD 20892-3580
Service Categories:
Services Provided:

Provides "Integrated Guidelines for Cardiovascular Health and Risk Reduction in Children and Adolescents" and Students with Chronic Illnesses: Guidance for Families, Schools, and Students.

Source: MHP-Nationwide
Last Updated: 12/30/2022
Nationwide Provider
663 13th Street, Suite 100
Oakland, CA 94612
Phone: 415-800-7777
Nationwide Provider
Address:
663 13th Street, Suite 100
Oakland, CA 94612
Phone: 415-800-7777
Toll Free Phone: 866-968-6642
Service Categories:
Email: coordinator@myotonicregistry.org
Services Provided:

Connects patients to researchers and allows patients to compare their symptoms with those of other patients. 

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
601 Elmwood Avenue, Box 673
Rochester, NY 14642-8673
Nationwide Provider
Organization Name: University of Rochester Medical Center
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Address:
601 Elmwood Avenue, Box 673
Rochester, NY 14642-8673
Service Categories:
Email: dystrophy_registry@urmc.rochester.edu
Services Provided:

Accelerates research in myotonic dystrophy and FSH dystrophy by connecting patients with researchers, collecting longitudinal data to track disease progression, and disseminating information to families, researchers, and care providers.

Source: MHP-Nationwide
Last Updated: 12/29/2022
Nationwide Provider
276 SW Lake Forest Way
Port St. Lucie, FL 34986
Phone: 617-347-1455
Nationwide Provider
Organization Name: National Association of State Controlled Substances Authorities
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Address:
276 SW Lake Forest Way
Port St. Lucie, FL 34986
Phone: 617-347-1455
Fax: 617-472-0521
Service Categories:
Services Provided:

Provides electronic databases which collect, maintain, and disseminate controlled substance prescription information specific to each jurisdiction's laws and regulations.

Source: MHP-Nationwide
Last Updated: 12/30/2022
Nationwide Provider
PO Box 8126
Gaithersburg, MD 20898-8126
Nationwide Provider
Organization Name: National Institutes of Health
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Address:
PO Box 8126
Gaithersburg, MD 20898-8126
Toll Free Phone: 888-205-2311
Service Categories:
Email: GARDinfo@nih.gov
Services Provided:

Provides a place for patients with rare diseases, such as Rett syndrome, MECP2 duplication, Rett-related disorders, and urea cycle disorders. Individuals can register and be contacted about clinical research opportunities and updates on the progress of research projects. The registry is anonymous and free of charge.

Source: MHP-Nationwide
Last Updated: 12/30/2022
Nationwide Provider
11637 Heilman Road
Levering,, MI 49755
Nationwide Provider
Address:
11637 Heilman Road
Levering,, MI 49755
Service Categories:
Services Provided:

Provides information about spinal cord injuries and research. 

Source: MHP-Nationwide
Last Updated: 12/30/2022
Nationwide Provider
1201 Ninth Avenue
Seattle, WA 98101
Nationwide Provider
Organization Name: Benaroya Research Institute
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Address:
1201 Ninth Avenue
Seattle, WA 98101
Toll Free Phone: 800-425-8361
Service Categories:
Email: Info@trialnet.org
Services Provided:

Provides research studies for type 1 diabetes.

Source: MHP-Nationwide
Last Updated: 12/30/2022
Nationwide Provider
230 South Frontage Rd.
New Haven, CT 06520
Nationwide Provider
Organization Name: Yale School of Medicine
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Address:
230 South Frontage Rd.
New Haven, CT 06520
Toll Free Phone: 844-362-9272
Service Categories:
Services Provided:

Provides research on autism and neurodevelopmental disorders.

Source: MHP-Nationwide
Last Updated: 12/30/2022