HomePathfinder SeriesClinical Trials 101: Resources for Alzheimer’s Patient

Clinical Trials 101: Resources for Alzheimer’s Patient

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Clinical Trials/Questions

 National Institutes of Health (NIH)

  • Understanding Clinical Trials – Answers the frequently asked questions about clinical trials, who can participate, benefits and risks, types of clinical trials and phases and explains key terms.
     http://clinicaltrials.gov/ct2/info/understand

NIH & Clinical Research

National Institute of Aging (NIA) and Alzheimer’s Disease Education And Referral Center (ADEAR)

National Institute of Mental Health

National Library of Medicine (NLM) and NIH

Food and Drug Administration

Project IMPACT (Increase Minority Participation and Awareness of Clinical Trials)

  • Patients/Consumers’ Information on Clinical Trials – Information from the National Medical Association to promote greater participation of African Americans in clinical trials. Discusses types of clinical trials, informed consent, questions to ask, and why participation by minorities is important.
     http://www.impact.nmanet.org/patientsconsumers

The Center for Information & Study on Clinical Research Participation (CISCRP)

Alzheimer’s Association

  • Clinical Studies - The Alzheimer’s Association is a voluntary health organization in Alzheimer’s care, support and research. The Clinical Studies section of their webpage describes reasons to consider participating in a clinical trial, the various phases of clinical trials, informed consent, and how to find a study.
     http://www.alz.org/alzheimers_disease_clinical_studies.asp

CenterWatch

Society for Women’s Health Research

U.S. Department of Health and Human Services, Office of Human Research Protections

 

Alzheimer’s Clinical Trials

Possible search terms: Alzheimer’s disease, Dementia, Memory loss

NIH ClinicalTrials.gov – ClinicalTrials.gov is a registry of federally and privately supported clinical trials and provides information about a trial's purpose, participation, locations, and contacts.
 http://clinicaltrials.gov

Alzheimer’s Association – Use the Clinical Trials Index to search specifically for Alzheimer’s disease and related disorders research studies. Search by a U.S. state or Canadian province.
 http://www.alz.org/alzheimers_disease_clinical_trials_index.asp

National Institute of Aging and Alzheimer’s Disease Education And Referral Center (ADEAR) – Provides the ability to search by trials by location (city, state, zip code), condition and disease stage, or by specific treatment (drug, device, procedure, etc.)
 http://www.alzheimers.org/clinicaltrials/search.asp

Center for Information & Study on Clinical Research Participation (CISCRP)-Search Clinical Trials – Search for clinical trials by entering search terms or checking a specific disease or condition. Search can be limited by zip code or U.S. state or Canadian Province.
 http://www.searchclinicaltrials.org/fastsearch/searchform.asp

NIH Clinical Center – Search the clinical trials taking place at the NIH Clinical Center in Bethesda, Maryland.
 http://clinicalstudies.info.nih.gov/

Alzheimer Research Forum – Drugs in Clinical Trials – This site searches only clinical drug trials. Provides several choices for sorting and viewing results.
 http://www.alzforum.org/dis/tre/drc/default.asp

CenterWatch – CenterWatch is a Boston-based publisher of medical information; a subsidiary of Jobson Medical Information, LLC. All trials listed have approval of the researcher’s Investigative Review Board. Search by medical condition or therapeutic area (medical specialty)
 http://www.centerwatch.com/clinical-trials/

Additional Resources

Books

The Alzheimer's Project: Momentum in Science (2009, ISBN 978-1586487560) by John Hoffman, Susan Froemke with Susan Golant; Foreword by Maria Shriver. Based on the HBO Documentary Film. Takes a look at the research devoted to untangling the science of Alzheimer’s disease including the development of new drugs. Also available as a DVD.

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems (2008, ISBN 0312355394) by P. Murali Doraiswamy M.D., Lisa P. Gwyther M.S.W., and Tina Adler. A highly recommended and clearly written book on early Alzheimer’s disease, testing and diagnosis, treatments, clinical trials, coping and living with the disease.

The 10 Best Questions for Living with Alzheimer’s (2008, ISBN 978-1416560517) by Dede Bonner and Roger A Brumback. A logical, sequential look at the progression of the disease with questions and answers to assist you through the process. Looks at assembling a medical team, choosing treatments including clinical trials, safety, day care and residential care, support for the caregiver and legal and financial issues. It’s a book you’ll refer back to many times.

The Gift of Participation: A Guide to Making Informed Decisions About Volunteering for a Clinical Trial (2007,ISBN 978-0615156644) by Ken Getz. This book looks at why clinical research studies are so important in the advancement of medical science and covers information the potential volunteer should know and ask to determine whether to participate. Includes information on insurance coverage, compensation and tax ramifications. For more information: http://www.ciscrp.org/patient/educ_materials/books_gift.html

Alzheimer's Early Stages: First Steps for Family, Friends and Caregivers (2003, ISBN 978-0897933971) by Daniel Kuhn. A balanced approach to diagnosis, symptoms, risk factors, awareness, changing roles, decision-making, communication, future planning, staying healthy, caregiver care, and resources. A short segment discusses the participation in clinical trials. Also available as an audio CD.

Alzheimer's for Dummies (2003, ISBN 978-0764538995) by Patricia B. Smith, Mary M. Kenan, Psy.D. Written in the easy-to-understand language that this series is known for by someone who is both a medical writer and has been an Alzheimer’s caregiver. Takes the reader through the journey from diagnosis, symptoms and treatment evaluation, including a full chapter on clinical trial participation, through managing the illness, and making medical, financial and legal decisions.

Informed Consent: The Consumer’s Guide to the Risks and Benefits of Volunteering for Clinical Trials (2002, ISBN 978-1930624092) by Ken Getz and Deborah Borfitz. A guide about participating in clinical trials, what you need to know beforehand, understanding informed consent, and safety measures.

Making Informed Medical Decisions: Where to Look and How to Use What You Find (2000, ISBN 1565924592) by Nancy Oster, Lucy Thomas, and Darol Joseff. A guide to understanding the medical research process, informed consent and making medical decisions.

DVDs

The Alzheimer's Project (2009) (Online and DVD)
4-part series; 30-120 minutes each
An Emmy Award winning series that looks at Alzheimer’s disease, families touched by the disease, new discoveries, and clinical research. The series includes: The Memory Loss Tapes, Grandpa, Do You Know Who I Am? with Maria Shriver, Momentum in Science, Caregivers
http://www.hbo.com/alzheimers/
*Guide (PDF): http://www.hbo.com/alzheimers/downloads/Science.com.pdf

Entering a Clinical Trial: Is It Right For You?(Drug Clinical Trials) (2004)(Online and DVD)
Dana Farber Cancer Center, 21 minutes.
Medical professionals and patients discuss clinical drug trial participation. While centered on cancer drug clinical trials, the information presented is useful for anyone considering participating in a clinical trial.
http://www.dana-farber.org/res/clinical/trials-info/default.html

YouTube videos – NIH4Health (viewed December 15, 2009) – While centered on cancer clinical trials, the information is pertinent to clinical trials for other conditions. Videos are captioned as well as spoken. 

Newsletters

 

National Institute on Aging & the Alzheimer's Disease Education and Referral (ADEAR) Center - Various publications, reports and Fact Sheets on Alzheimer's Disease and Caregivers.  Some publications include information on clinical trials under their "testing therapies" section.
 http://www.nia.nih.gov/alzheimers/publication/2011-2012-alzheimers-disease-progress-report

Medical Heroes (CISCRP) – Features stories of individuals who volunteered for various types of clinical trials (not specifically Alzheimer’s disease), and other information about clinical trials.
 http://www.ciscrp.org/patient/medheroes_newsletter.html

MedlinePlus Magazine – a publication of the National Institutes of Health and the Friends of the National Library of Medicine.
Summer 2008, 3(3):2-3 The Value of Medical Research
Summer 2008, 3(3):4-5 Clinical Trials: Key to Medical Progress
 http://www.nlm.nih.gov/medlineplus/magazine/issues/summer08/toc.html

Fall 2010, 5(3):4-5 Clinical Trials 
Fall 2010, 5(3):4-5 Alzheimer's disease
http://www.nlm.nih.gov/medlineplus/magazine/issues/fall10/toc.html
Summer 2011 6(2):2-3 The Importance of Clinical Trials
http://www.nlm.nih.gov/medlineplus/magazine/issues/summer11/toc.html
Summer 2013 8(2):2-3 Unlocking the Brain
Summer 2013 8(2): 16-17 Understanding Memory Loss
http://www.nlm.nih.gov/medlineplus/magazine/issues/summer13/toc.html

Español

Asociación de Alzheimer (Alzheimer’s Association)

 http://www.alz.org/espanol/overview-espanol.asp

Biblioteca Nacional de Medicina and Institutos Nacionales de la Salud – (National Library of Medicine and the Institutes of Health)

Administración de Alimentos y Medicamentos - (Federal Drug Administration)

Centro para la Información y el Estudio de Participación en Investigación Clínica (The Center for Information & Study on Clinical Research)


 

* PDF documents require Adobe Reader™ which can be downloaded for free here.

This pathfinder was supported by a Carnegie-Whitney Grant awarded by the American Library Association to the Shimberg Health Sciences Library, University of South Florida in Tampa, Florida.

Created by Allison M. Howard, MLIS, AHIP with assistance from John Orriola, MA, M.Ed, AHIP for the Spanish translations.

©2009

Last Updated on Saturday, 24 August 2013 17:24

 
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