Perseverance: YOU Be that One in a Million!: CLINICAL TRIALS: HIGHLIGHTING CHIARI TYPE I

The Focus For Invisible Illnesses and Disabilities: SOLUTIONS

by Dr Margaret Aranda

Instead of accepting your illness or malformation, have you given some thought to participating in a clinical research study? The goal is for doctors and scientists (or physician/scientists, the MD, PhDs) to learn from you, to increase the knowledge base, so that doctors can help the next person.

It is considered to be a very selfless and benevolent thing for a patient to do, an honorable and respectable decision to make. We are all focused on "Solutions for the Future" by learning from today. It could mean someone else's "miracle" tomorrow.

Image. MRI Sagital cut of Chiari Type I Malformation. Look at the ARROW ~ the Arrow points to an area of the bony brain, the uncus, that the actual brain itself is herniating down into, below into the spinal cord. Ouch! Not only does this cause pain and headaches, but it blocks the cerebral spinal fluid (CSF) from being passed down the spinal cord. The head would blow up if it was a baby with head bones that are pliable and have not fused together yet. But in adolescents and adults, a drain is often needed to re-route the CSF from the brain to the abdominal cavity, where it gets absorbed by the body.

Participating in a Clinical Study is one way to contribute to the amount of medical knowledge that physician/scientists have in their own armamentarium against illnesses, syndromes, and anatomical malformations. Have I ever been a patient in a Clinical Study? Yes. Have I ever been the Principal Investigator who wrote the original study that went to the Institutional Research Board (IRB) for approval? Yes. Have I ever written the National Institutes of Health (NIH) to apply for a grant to do such research? Yes. $3 million worth. Even amongst the MD, PhD researchers, this is just grand.

Have I ever sat on an IRB and pored through research proposal after research proposal to put in my own vote on whether it should or should not be approved? Yes. Have I stopped certain studies from being approved, based on my experience as an anesthesiologist and Critical Care doctor? Yes.

Have I ever sat on a Hospital Ethics Committee that looks at all aspect of ethical questions that arise from patient care or research? Yes. I was a member of the Ethics Committee at the University of Pennsylvania, and I believe that I was asked to be placed there because I had a reputation for my high sense of ethics.

Can I vouch for each/any of these researchers? No. They aren't me. I could only vouch for myself. But this is what the NIH is funding, these are the MDs and PhDs and MD, PhDs that have dedicated a fair amount of "headache" time just to write up a clinical study protocol and get it through their own IRB AND get it funded through the NIH. So, I gotta hand it to them ~ They must have dedication.

I don't expect the general public to know how to look up the available Clinical Trials that are opened to receive patients, and some studies open and close with changing schedules depending on a multitude of reasons.

So, here's my MEDICAL DISCLAIMER: Not intended as an endorsement, recommendation, or suggestion for any one patient, because I have not met you in person. Not responsible for any adverse effects whether due to studies being closed, the researchers not accepting you, the study being in another city or country, pain, suffering, or side effects from being a research participant, or providing you with this list. You are responsible for yourself. This is public information that any one can access; I am only simplifying the access for you here. If you proceed further with contacting any person on any study listed, you do so at your own risk, absolving me of any responsibility at all.

Such is the world that we live in, and all we are doing is trying to help find SOLUTIONS. In my opinion, this is an open door to a new world of clinical research that has been largely untapped because of lack of awareness, knowledge, or inspiration. Bon voyage!

1. Genetic origin of smaller lower skull gene.
ClinicalTrials.gov identifier: NCT00004738
Contact: Gretchen C Scott, R.N.
Email: SNBrecruiting@nih.gov
WEBSITE: Clinical Study on Genetics of Chiari

2. DECOMPRESS Study: Compares superiority of autologous vs non-autoloous grafts for decompression surgery.
LOCATION: Phoenix, ARIZONA
ClinicalTrials.gov Identifier: NCT01667770
Contact: Madelon Petersen, RN 602-406-3246
Email: madelon.petersen@dignityhealth.org
WEBSITE: Clinical Study on Decompression

3. A Prospective Natural History Study of Patients With Syringomyelia.
ClinicalTrials.gov Identifier: NCT01150708
Contact: Gretchen C Scott, R.N.
Email: SNBrecruiting@nih.gov
WEBSITE: Clinical Study on Natural History

4. Prenatal Surgical Repair of Fetal Myelomeningocele (PRIUM).
ClinicalTrials.gov Identifier: NCT01983345
LOCATION: Paris, FRANCE
Contact: Jean-Marie Jouannic, PUPH Phone: 0033144735228
Email: laurence.lecomte@nck.aphp.fr
WEBSITE:Clinical Study on Surgical Repair of Fetal Myelomeningocele

5. Efficacy of Acetaminophen in Posterior Fossa Surgery.
ClinicalTrials.gov Identifier: NCT02532322
LOCATION: Washington, DC
Contact: Srijaya K Reddy, MD, MBA (202) 476-2025
Email: sreddy@cnmc.org
WEBSITE:Clinical Study on How Efficient Acetaminophen is in Posterior Fossa Surgery

6. Treatment of Infected Surgical Wounds With Negative Pressure Topical Therapy and Instillation (With or Without Antiseptic) Versus no Instillation (PTN-INSTILL).
ClinicalTrials.gov Identifier: NCT02500875
LOCATION: Bologna, Italy
Contact: Paolo Chiari
Email: paolo.chiari@aosp.it
WEBSITE: Clinical Study on Infected Wounds

7. Fetoscopic Meningomyelocele Repair Study (fMMC).
ClinicalTrials.gov Identifier: NCT02230072
LOCATION: TEXAS Children's Hospital
Contact: Michael Belfort, M.D. 832-826-7375
Email: belfort@bcm.edu
WEBSITE: Clinical Study on Fetoscopic Meningomyelocele Repair

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Dr Aranda's Short Stories

Age 1: A Baby on the Edge

Age 2: Getting Past the Edge of the Bed

Age 3: The Edge of the Cliff

Age 4: Don't Panic

Age 5: The Edge of the Pool

Age 6: Glistening in the Moonlight

Age 7: The Pigeon Boy, The Suction Bush, and The Darkness

Age 8: Selling Cupcakes

Age 9: Sitting on the Edge of the Cave

Age 10: Mr. Bubble